[Congressional Record (Bound Edition), Volume 149 (2003), Part 18]
[Senate]
[Pages 24455-24470]
[From the U.S. Government Publishing Office, www.gpo.gov]




           GENETIC INFORMATION NONDISCRIMINATION ACT OF 2003

  The PRESIDING OFFICER. Under the previous order, the hour of 2:15 
p.m. having arrived, the Senate will resume consideration of S. 1053, 
which the clerk will report.
  The assistant legislative clerk read as follows:

       A bill (S. 1053) to prevent discrimination on the basis of 
     genetic information with respect to health insurance and 
     employment.

  The PRESIDING OFFICER. Under the previous order, there will be 15 
minutes of debate equally divided, followed by a vote on passage of the 
bill. Who yields time?
  The Senator from New Hampshire.
  Mr. GREGG. Mr. President, I yield myself such time as I may consume.
  This is important legislation. It has been 6 years in gestation. It 
is legislation which is not only important to our research community 
but, more importantly, it is a major piece of civil rights legislation 
in that it protects people in their employment and in getting health 
care.
  Essentially, we are in a new world in the community of health care 
where you will actually be able to go to your doctor someday not too 
long from now, and probably in some instances even today, and he will 
be able to tell you some of the most severe illnesses projected for 
your lifetime. That is called genetic information. It is great medical 
news that we have moved this far, and there is a lot that will occur 
that is positive as a result.
  The other side of the coin is this information could be used 
arbitrarily, unsuspectingly, or even intentionally to harm your 
employment or your capacity to get health insurance. This legislation 
corrects that concern. It makes it possible to continue genetics 
research without people having to be concerned about the way their 
personal genetics information may be used. That is why it is important.
  A lot of folks have worked very hard on this bill. Senator Kennedy 
has worked tirelessly to pass it. Senator Daschle has worked 
aggressively to pass it. Senator Jeffords, when he was chairman of the 
committee, worked very hard.
  On our side of the aisle, Senator Enzi has made a major contribution 
in the area of employment, and Senator Snowe was one of the originators 
of the initiative.
  At this point, I reserve the remainder of my time and yield the 
floor.
  The PRESIDING OFFICER. The Senator from Massachusetts.
  Mr. KENNEDY. Mr. President, I see one of the primary sponsors, the 
Senator from Maine. I will withhold and make comments when she 
finishes.
  Mr. GREGG. I yield 3 minutes to the Senator from Maine.
  Ms. SNOWE. I thank the Senator from New Hampshire, chairman of the 
committee, whose guidance throughout this process ultimately culminated 
in this most significant piece of legislation. I express my 
appreciation to him and to the Senate majority leader, without whose 
leadership this legislation would not be possible, and to the 
Democratic leader as well, and to Senator Kennedy, Senator Enzi, and, 
of course, Senator Jeffords, who sponsored this effort with me some 7 
to 8 years ago. I also acknowledge the presence of Representative 
Slaughter from New York who has led the effort in the House for 
approximately 8 years at this point.
  This is the culmination of bipartisan efforts over the last 8 years 
and over the last 2 years of bipartisan negotiations where we were able 
to merge the differences between the legislation that I introduced and 
that was introduced by Senators Daschle and Kennedy.
  The fact is, since April of 1996, when I first introduced the Genetic 
Nondiscrimination Health Insurance Act, science has continued to hurdle 
forward, further opening the door to early detection and medical 
intervention through the discovery and identification of specific genes 
linked to diseases such as breast cancer, colon cancer, cystic 
fibrosis, and Huntington's disease. That 1996 legislation recognized 
that with the progress in the field of genetics accelerating at a 
breathtaking pace, we needed to ensure that with the scientific 
advances to come, we would advance the treatment and prevention of 
disease without advancing a new basis for discrimination.
  Certainly everything changed with the unveiling of the first working 
draft of our entire genetic code. It became all the more imperative 
that we respond with legislation that would at once allow the 
tremendous promise of this breakthrough while at the same time protect 
the American people from the dark side of discrimination.
  Because there has been so many other scientific advancements this 
carried with it, not only the prospect of scientific and medical 
discoveries, such as improved detection and earlier intervention, but 
also the potential for harm and abuse, every day since--absent 
enactment of this type of legislation--has been a day we have left the 
full potential of the human genome untapped.
  This is no solution in search of a problem. To the contrary, the very 
real fear of repercussions from one's genetic makeup was specifically 
brought home to me through the real-life experience of one of my 
constituents, Bonnie Lee Tucker. Bonnie wrote to me about the fear of 
having the BRCA test for breast cancer. She was in a family who had 
nine members with breast cancer. She herself is a survivor. She feared 
having the BRCA test because she worried it would ruin her daughter's 
ability to obtain health insurance in the future.
  I ask that everybody support this legislation because, clearly, this 
is one of the most significant groundbreaking pieces of legislation we 
could have in the area of medical health care.
  The PRESIDING OFFICER. The Senator from Massachusetts is recognized.
  Mr. KENNEDY. I yield myself 2\1/2\ minutes.
  First, I thank my colleague and friend, the chairman of the 
committee, Senator Gregg, for prioritizing this issue. It is a matter 
of enormous importance. I thank him and I thank Senator Snowe, who has 
been a leader on this issue for a number of years. This has truly been 
a bipartisan effort. I also thank our majority leader, Senator Frist, 
also a doctor, who understands this issue and has been very 
cooperative; Senator Enzi, who chairs a subcommittee in this area of 
policy, has helped to advance this program. We

[[Page 24456]]

are grateful for the strong bipartisanship. I wish to recognize 
Congresswoman Slaughter, who initiated the original legislation, and 
today we pay tribute to her.
  Also, I thank our Democratic leader, Tom Daschle, who, in 1997, was 
the first person to introduce the comprehensive genetic discrimination 
program. Our friend, Senator Jeffords, has been an advocate for the 
elimination of genetic discrimination; Tom Harkin and Chris Dodd have 
been tireless advocates to make sure we got to this particular day.
  I am going to yield time to Senator Harkin in a minute.
  In 1964, this Nation passed the important civil rights legislation to 
ban discrimination in our society in employment and public 
accommodations, among other things. Then in 1965 we banned 
discrimination in voting. Then, in 1968, we passed legislation to ban 
discrimination in housing. Then, under the leadership of my friend from 
Iowa, in 1990, the Americans with Disabilities Act passed to ban 
discrimination on the basis of disability. We have also done much to 
eliminate discrimination on ethnicity, on national origin, and we have 
made enormous progress in discrimination on gender. We still have not 
made enough progress on discrimination regarding gay and lesbian 
issues. Today, we are continuing the march toward equality in the 
United States, understanding the importance of eliminating 
discrimination based upon an individual's genetic makeup, in terms of 
insurance and in terms of employment. We are doing it in a way that is 
going to guarantee real remedies. This is not just legislation that 
will be out there and say we are against this form of discrimination; 
we are providing real remedies. From now on, individuals will know that 
no matter what their genetic makeup or susceptibility to genetic 
disease, they may not be discriminated against in the job place or in 
the provision of health insurance.
  This is a major continuing step toward greater equality and the 
elimination of bigotry and discrimination in our society. It is an 
important day in the Senate. I commend all of those and the staff for 
all they have done so well to make it possible.
  I yield 3\1/2\ minutes to the Senator from Iowa.
  Mr. HARKIN. Mr. President, I thank the Senator from Massachusetts for 
the time. I join with him and others in thanking our leaders for 
bringing this bill forward. I congratulate Senator Gregg, chairman of 
our committee, Senator Kennedy, ranking member on our side, Senator 
Snowe, and all the other Senators they have mentioned, who have worked 
so hard to get us to this point. Again, I thank the leadership for the 
vote today.
  I was present sort of at the gestation period and finally the birth 
of the mapping and sequencing of the human genome. What a magnificent 
step forward this was in terms of our understanding of the underlying 
basis for many of our diseases and illnesses. This feat of sequencing 
and mapping of the 3.1 billion base pairs of the human genome, 
sometimes called ``the book of life,'' opens up a world of 
possibilities for preventing and curing disease. New genetic tests take 
the concept of early detection and treatment of disease to levels that 
were previously only imagined but are now scientifically possible. 
Discoveries have been made about the genetic basis of many diseases, 
such as heart disease, diabetes, Parkinson's disease, and asthma. Tests 
are already available for breast cancer, ovarian cancer, colon cancer, 
and several other diseases.
  But while the potential medical and health benefits of this new 
technology seem limitless, they cannot be pursued without caution and 
safeguards against abuse, such as discrimination by health insurers or 
employers. The Genetic Information Nondiscrimination Act, before us 
now, addresses these possible abuses. It establishes protections 
against discrimination based upon genetic information both in health 
insurance and employment. It is a gigantic step forward, as Senator 
Kennedy said, in making sure people are not discriminated against 
simply because of what their genes are.
  While this bill doesn't include everything I believe it should have 
included, it is a significant step forward for the American people and 
for our health care system. Under this bill, individuals will finally 
be protected from discrimination by health insurers or employers based 
on genetic makeup. Everybody will have the peace of mind to seek 
answers to questions about themselves without fear of losing their 
health insurance or their job.
  I commend those leaders who have brought this forward and yield back 
whatever time I may have remaining.
  Mr. ENZI. Mr. President, 50 years ago James Watson and Francis Crick 
discovered the structure of the DNA molecule--the blueprint of life. 
Their discovery laid the foundation for predicting and treating the 
hereditary diseases that threaten us.
  The completion of the Human Genome Project in April 2003 was a 
significant step towards this goal. Because of the work of these 
scientists, we now are able to decipher the exact sequence of the 
genetic code. This knowledge will allow earlier detection and more 
effective treatment of genetic illnesses.
  However, genetic information brings challenges along with promise. 
The Genetic Information Nondiscrimination Act will ensure that the 
promise of genetic information is not hindered by fears about its 
misuse. This legislation will protect individuals from discrimination 
in health insurance and employment on the basis of genetic information.
  I thank my colleagues on both sides of the aisle for crafting a bill 
that fairly and effectively protects people against genetic 
discrimination. In doing so, we have been mindful of existing 
discrimination and privacy laws and regulations. While the issue is 
complex, our objective is clear: to encourage people to seek genetic 
services by reducing fears about the misuse or unwarranted disclosure 
of genetic information.
  Today, we mark the 50th anniversary of Watson and Crick's historic 
discovery with the passage of the Genetic Information Nondiscrimination 
Act. With each new advance in genetic science, the significance of this 
legislation grows. By allaying fears about genetic discrimination in 
health insurance and in the workplace, this legislation will save lives 
now and in generations yet to come.
  (At the request of Mr. Daschle, the following statement was ordered 
to be printed in the Record.)
 Mr. KERRY. Mr. President, it is high time we have a strong 
genetic information protection law on the books. The Senate bill I am 
voicing support for today is a step in the right direction. However, 
while I am pleased to join a bipartisan effort to pass S. 1053, the 
Genetics Information Nondiscrimination Act, I hold out hope that the 
enforcement provisions in the bill can be strengthened prior to final 
passage. The House of Representatives will soon be conducting hearings 
on the unanimously-passed Senate legislation and will be working to 
craft their own version of the law. I sincerely hope that the House 
works to strengthen--not weaken the bill. One area where the bill can 
be strengthened is to give some real teeth to the enforcement 
protections. If our goal of limiting discrimination based on genetic 
information is to be realized, we must work to ensure that those whom 
we seek to protect can truly use this law to guard against 
discriminatory actions.
  Mr. DODD. Mr. President, over the past decade, the science of 
genetics has developed at an astonishing pace. The mapping of the human 
genome is undoubtedly one of the greatest scientific achievements of my 
lifetime. We have not even completely grasped the wide array of 
potential benefits that may come from our newfound genetic knowledge. 
Certainly, the impact on our health will be profound. Doctors will be 
able to read our unique genetic blueprints and predict the likelihood 
of developing diseases such as cancer, Alzheimer's, or Parkinson's. 
They will also be able to use an individual's genetic information to 
develop treatments for these same diseases and target individuals with 
the treatment that will work best for them. This is

[[Page 24457]]

not science fiction--it is already beginning to happen.
  For all the promise of the genetic age, there is also an inherent 
threat. Science has outpaced the law and Americans are worried, and 
rightly so, that their genetic information will be used, not to improve 
their health, but to deny them health insurance or employment. There is 
no information more personal and private than genetic information and 
no information more worthy of special protection. Our genetic code is 
the very blueprint of ourselves. It is with us from birth, and to some 
extent it determines who we will become. What an incredibly powerful 
tool, with its vast potential to help us live healthier lives. But the 
nature of genetic information also makes it dangerous to the individual 
if used incorrectly.
  This is why so many of us, on both sides of the aisle, saw the need 
several years ago for legally enforceable rules to maximize the 
potential benefits of genetic information and minimize its potential 
dangers. The legislation before use represents a culmination of the 
efforts of many of us to establish such rules. It represents an 
enormous step forward, and I wish to acknowledge the hard work of 
everyone who was involved in crafting this legislation.
  This bill provides significant new protections against the misuse of 
genetic information. It ensures that Americans who are genetically 
predisposed to health conditions will not lose or be denied health 
insurance, jobs, or promotions based on their genetic makeup. Reaching 
an agreement on this legislation means that our laws dealing with 
genetic information can begin to catch up to the reality of our 
technological capability in the field.
  With these protections in place, individuals need not feel reluctant 
to get the tests that may save or improve their lives. Although the 
Americans with Disabilities Act, ADA, and the Health Insurance 
Portability and Accountability Act, HIPAA, took important steps towards 
preventing genetic discrimination, this legislation is more 
specifically tailored to prohibiting its misuse. Health plans and 
health insurance issuers will not be allowed to underwrite, determine 
premiums, or decide on eligibility for enrollment based on genetic 
information. Employers will not be allowed to alter hiring practices 
based on genetic information. The American public can feel secure in 
the knowledge that their genetic blueprint will not be used to harm 
them, that a genetic marker indicating a possible illness later in life 
will not cause them to lose a job or health insurance.
  This is by no means a perfect or complete bill. In particular, while 
it poses some important limitations on the collection of personal 
genetic information by insurance companies, it would allow them to 
collect this information, without consent, once an individual is 
enrolled in a health plan. While insurers are expressly prohibited from 
using this information for the purposes of underwriting, I am concerned 
that once they have this information, it may be difficult to control 
how it is used and who has access to it. We all know from experience 
that the difficulty of protecting information increases exponentially 
with each additional person who has access to that information.
  Let me add that, during negotiations, good faith attempts were made 
on both sides to address these concerns. Unfortunately, we could not 
reach an agreement on this issue that made all parties comfortable. As 
a result, the bill falls short of offering comprehensive privacy 
protection. Personal genetic information is already widely available, 
and the risk of abuse is high. Health plans and employers will have 
legitimate reasons for collecting genetic information. But individuals 
should be given the power to regulate how such information is 
distributed, and with whom it is shared. As this bill becomes law, and 
I sincerely hope it will, I will monitor closely how it is implemented, 
and the extent to which privacy is protected. We may need to revisit 
this issue in the future.
  Despite this shortcoming, I support this bill, as it represents a 
vast improvement over current law in many ways. I hope that it will 
become law in the very near future. We all should feel free to make our 
health care decisions based on our health care needs, not based on 
fear. Today, we are close to making that goal a reality.
  Mrs. CLINTON. Mr. President, S. 1053 has the laudatory goal of 
prohibiting genetic discrimination. Genetic discrimination has many 
victims, and their stories are wrenching. There are those who cannot 
get coverage, as well those who lost job opportunities. But I want to 
make sure we don't forget another category of victims--those who forego 
important tests out of fear that they will be victimized. According to 
a recent JAMA article, 57 percent of patients at risk for breast and 
ovarian cancer declined a needed genetic test that could have guided 
prevention and treatment interventions. That is why our goal should 
have been jot just to pass a bill, but to pass a credible bill so that 
people have enough confidence in our work to go our and get the health 
services they need.
  Unfortunately, I am concerned that the enforcement provisions of S. 
1053, particularly in health insurance, are not strong enough to 
accomplish the legislation's goal.
  Our Nation has made significant investments in genetic research. This 
research could one day lead to cures or preventions for diseases such 
as cancer. This investment in genetic research will prove futile if the 
result is not better health care. Individuals must participate in 
genetic research if this Nation is to reap the rewards of our 
investment and individuals must have confidence in the results of 
genetic research in order to address their personal health issues. 
However, as genetic information is increasingly revealed, great harm 
can occur. As President Bush acknowledged in his June 23, 2001 radio 
address:

       This knowledge of the code of life has the potential to be 
     abused. Employers could be tempted to deny a job based on a 
     person's genetic profile. Insurance companies might use that 
     information to deny an application for coverage, or charge 
     excessive premiums.

  Americans have already shown that they will not fully participate in 
genetic research or take advantage of genetic technologies until they 
believe that they are protected against genetic discrimination in 
health insurance and employment. Without protection, patients fear 
disclosing their family history, yet this hesitancy may impact the care 
that they and their families receive.
  As you recognize, genetic information is uniquely personal 
information. It is fundamentally different from other medical 
information. Because genetic information can be used against an 
individual and an entire family, it enables a new form of 
discrimination. It deserves strong enforcement and should not be 
treated the same as other information in a medical record.
  In order for S. 1053 to achieve its purpose, individuals must have 
confidence in its enforceability. That confidence will be difficult to 
instill without mechanisms such as access to a court or comparable 
forum to seek redress for violations of the statute. In addition, it is 
important that the public feel confident that violations are unlikely. 
This reassurance can only come from legislating strong enforcement and 
deterrence mechanisms. I would have liked to see the enforcement 
mechanisms and remedies in S. 1053 strengthened to provide for 
compensation for economic and non-economic damages and strong punitive 
provisions. If there is no redress for individual harm and if nominal 
fees are the only accountability mechanism in place, there is little to 
deter health insurers and employers from using genetic information in 
violation of the law.
  However, I believe that this bill does make a start in the direction 
of supporting the principle that advances in science should help move 
civilization forward, not to reverse our progress. Discrimination based 
on genetic information would be a step backward for civil rights and 
human dignity. That is why I support action today to begin addressing 
this issue, and hope that in the future we will reinforce today's 
action with improvements to secure justice and civil rights for all 
Americans.

[[Page 24458]]


  Mr. JEFFORDS. Mr. President, today's consideration of S. 1053, the 
Genetic Information Nondiscrimination Act, is the result of almost 6 
years of effort, so I am especially pleased that we are here today to 
consider and pass this bipartisan legislation. For the first time, S. 
1053 will prohibit discrimination against individuals based on their 
genetic make-up in both health insurance and employment. This 
legislation represents a major contribution to civil rights law. It is 
a victory for consumers, health insurers and health care providers; and 
it is a victory for employees and employers.
  The issue of genetic nondiscrimination has concerned me for many 
years, and I have been pleased to work with many members of the Senate 
to craft this legislation. The measure we are considering today is the 
result of many years of effort and the contributions of many 
individuals. It is an example of the progress that can be made when the 
Senate seeks to negotiate and compromise on a bipartisan basis.
  Together with the much deserved excitement over the potential of 
genetic research there have also been long standing concerns that 
genetic information, in the wrong hands, could be misused. Many people 
have argued that an individual's genetic information--that might 
indicate a predisposition to a particular disease--could be used to 
deny that individual health insurance or employment opportunities. The 
promise of better health would instead become a potential for greater 
discrimination and disadvantage. The Genetic Information 
Nondiscrimination Act of 2003 is designed to address those concerns.
  Existing antidiscrimination law has been enacted over the years as a 
means of correcting long-standing abuses in voter rights, employment, 
housing and education. But under current law a person who has suffered 
employment or health insurance discrimination because of their genetic 
makeup has very little, if any, recourse to legal remedies. This 
legislation addresses this problem by creating new enforceable rights 
for individuals similar to those available under existing civil rights, 
education and fair employment law.
  It is important to note that to date, there has not been a pattern or 
clear prevalence of genetic discrimination. But there is anecdotal 
evidence that people have refused to take genetic tests because of 
their fear that the predictive information would lead to 
discrimination. We know the science is rapidly moving forward and we 
are learning more every day about the ``predictive'' correlation 
between genetic markers and certain diseases. It is not difficult to 
imagine such discrimination occurring in the near future. So in a 
sense, we can take that rare opportunity to be ahead of the curve and 
enact legislation to preempt discriminatory practices and prevent them 
from ever happening.
  I believe the compromise legislation we consider today will be 
successful in preventing abuses in the insuring of health services and 
employment. However, we must remain vigilant against this type of 
discrimination from ever getting a foothold in our society and if this 
measure proves insufficient and needs to be strengthened then we will 
be back and that effort will have my support.
  There are many Members who have played a significant role in bringing 
together two different, though similar bills. My friend, Senator Snowe, 
led one effort in which I was proud to join together with Senators 
Frist, Enzi, Collins, and Hagel. In another effort, Senator Daschle was 
joined by Senators Kennedy, Dodd, and Harkin. That measure focused 
attention on the need for employment provisions and contributed to a 
better understanding of the many critical and complex definitions. 
Finally, I want to salute Senator Gregg, who as chairman of the HELP 
Committee devoted his energies to finding a middle ground that has made 
this legislation possible.
  I am pleased at the willingness both sides have shown to work through 
the many difficult aspects of this key issue. Through many meetings and 
discussions we have been able to reach agreements on many important 
issues, and improve the legislation. I look forward to continuing this 
cooperative approach as we move to enact this important and landmark 
initiative and I urge our colleagues in the House to pass it as well. 
This legislation is supported by the President and it is my hope that 
we can enact it into law before the end of this Congress. I urge all of 
our colleagues to vote in its favor.
  Mr. CORZINE. Mr. President, I am pleased that today the Senate is 
considering legislation designed to prohibit discrimination in health 
insurance and employment based on genetic information.
  In the last decade, biomedical researchers have made great strides in 
genetic research. While these discoveries are critical to researching 
treatments and, ultimately, discovering cures for many diseases, this 
information also has the potential to be used to deny health care 
insurance or employment to an individual who has a genetic 
predisposition to an illness. That is why we must make it illegal for 
employers and health insurers to discriminate against individuals on 
the basis of their genetic information.
  S. 1053 is an important step, but it is only a first step. Any 
legislation addressing this issue must include strong enforcement and 
deterrence mechanisms. As this legislation moves forward, I hope its 
enforcement provisions will be strengthened. Without strong 
accountability provisions, there is little to deter employers and 
health insurers from using genetic information inappropriately.
  In addition, I hope that when this legislation is conferenced, the 
conferees will find ways to strengthen the privacy provisions. It is 
essential that our laws keep pace with technological advances and that 
we continue to protect the privacy of our citizens. Advances in 
technology cannot place fundamental American rights at risk.
  Despite my concerns about the enforcement and privacy provisions, I 
believe this legislation is a critical first step and look forward to 
working with my colleagues to continue addressing the important issue 
of genetic discrimination.
  Mr. SCHUMER. Mr. President, today, the Senate came together to pass 
S. 1053, the Genetic Information Nondiscrimination Act. I cast my vote 
in favor of this bill because I think it takes an important first step 
in the right direction. It is my view, however, that the bill does not 
go far enough. I commend my colleagues for their efforts to craft a 
bipartisan compromise, but I have serious concerns that the final bill 
does not include adequate enforcement provisions.
  The Genetic Information Nondiscrimination Act prevents employers and 
insurance companies from treating individuals differently because of 
their genetic predispositions. It stops a health insurance company, for 
example, from charging an individual a higher premium because her 
mother had breast cancer.
  S. 1053 does not, however, have adequate enforcement provisions. 
There is no recourse for individuals who feel that their rights under 
the law have been violated. There is no opportunity for a person to 
hold his employer accountable for genetic discrimination in a court of 
law. The current accountability provisions, which consist of nominal 
fees, are not sufficient in order to protect individuals who have been 
treated unfairly because of a genetic predisposition.
  Therefore, I voted for this bill with some reluctance. I was very 
pleased to see this issue addressed in the Senate, but concerned that 
the language of the bill does not adequately protect the people for 
whom it was written. I hope that there will be opportunities in the 
future to strengthen this bill and ensure the rights of victims of 
genetic discrimination.
  Mr. DOMENICI. Mr. President, I rise today in support of the Genetic 
Information Nondiscrimination Act of 2003, a bill that will prohibit 
discrimination based on genetic information with respect to employment 
and health insurance. This bill represents much cooperation on the part 
of my colleagues, and I want to recognize Senators Snowe, Frist, 
Jeffords, Daschle, Kennedy, and also HELP Committee

[[Page 24459]]

Chairman Gregg, for all the hard work done on this important issue.
  I am extremely pleased with today's passage of the Genetic 
Information Nondiscrimination Act, as it marks a great milestone for 
those of us involved in the Human Genome Project. It seems only a short 
time ago that the Human Genome Project was created as a joint effort 
between the Department of Energy and the National Institutes of Health. 
What progress we have made.
  In the last two years, there have been many events celebrating the 
completion of maps of the human genome. The genome map has brought a 
promise of improved health through revolutionary new treatments for 
illness and disease. The ultimate result of mapping the human genome is 
a complete genetic blueprint, a blueprint containing the most personal 
and most private information that any human being can have. We will now 
have a wealth of knowledge of how our countless individual traits are 
determined. And perhaps more important, we will have fundamental 
knowledge about the genes that can cause sickness and sometimes even 
death.
  Our personal and unique genetic information is the essence of our 
individuality. Our genetic blueprint is unique in each of us. However, 
as genetic testing becomes a more frequently used tool, we now must 
begin to address the ethical and legal issues regarding discrimination 
on the basis of genetic information. Questions regarding privacy and 
confidentiality, ownership and control, and consent for disclosure and 
use of genetic information need to be carefully considered.
  An unintended consequence of this new scientific revolution is the 
abuses that have arisen as a result of our gathering genetic 
information. Healthy people are being denied employment or health 
insurance because of their genetic information. By addressing the issue 
of nondiscrimination, we are affirming the right of an individual to 
have a measure of control over his or her personal genetic information.
  Genetic information only indicates a potential susceptibility to 
future illness. In fact, many individuals identified as having a 
hereditary condition are, indeed, healthy. Some people who test 
positive for genetic mutations associated with certain conditions may 
never develop those conditions at all. Genetic information does not 
necessarily diagnose disease; yet, many people in our society have been 
discriminated against because other people had access to information 
about their genes, and made determinations based on this information 
that the individual was too risky to insure or unsafe to employ.
  While the issue is complex, our objective is clear; people should be 
encouraged to seek genetic services and they should not fear its 
discriminatory use or disclosure. The Genetic Information 
Nondiscrimination Act is an important first step towards protecting 
access for all Americans to employment and health services regardless 
of their genetic inheritance. There is simply no place in the health 
insurance or employment sector for discrimination based solely upon 
genetic information.
  Mr. KENNEDY. How much time do I have?
  The PRESIDING OFFICER. The Senator has a minute and a half.
  Mr. KENNEDY. I yield myself the remaining time.
  I ask unanimous consent that a statement of the administration's 
policy be printed in the Record.
  There being no objection, the material was ordered to be printed in 
the Record, as follows:

                   Statement of Administration Policy

       The Administration is committed to enactment of legislation 
     to prohibit genetic discrimination in health insurance and 
     employment. The Administration supports S. 1053, which would 
     bar health insurers from denying coverage to a healthy 
     individual or charging the person higher premiums based 
     solely on a genetic predisposition to developing a disease in 
     the future. The bill also would prohibit employers from using 
     individuals' genetic information when making hiring, firing, 
     job placement, or promotion decisions.
       The Administration wants to work with the Congress to 
     ensure that individuals can be certain that they are 
     protected against the improper use of genetic information. 
     Unwarranted use of genetic information, and the fear of 
     potential discrimination, threatens both society's ability to 
     use new genetic technologies to improve human health and the 
     ability to conduct the very research needed to understand, 
     treat, and prevent diseases. Enactment of Federal legislation 
     will help guarantee that the Nation fully realizes the 
     potential of ongoing advances in genetic sciences.

  Mr. KENNEDY. Mr. President, it is important to know that President 
Bush, in 1997, while the governor of Texas, signed a law prohibiting 
genetic discrimination. He also went to the Nation in a radio address 
on June 23, 2001 and supported the elements included in this law. We 
have a very strong Statement of Administration Policy in support of 
this program.
  We thank the President for his strong support and we will work with 
our Republicans friends to try to make sure this message goes to the 
House of Representatives and that they respond in a similar way.
  I hope we will have an overwhelming vote in the Senate today. It is 
one of the most important bills we will consider this Congress.
  I yield back my time.
  The PRESIDING OFFICER. The Senator from New Hampshire is recognized.
  Mr. GREGG. Mr. President, I thank the Senator from Massachusetts for 
his aggressive and effective leadership on this issue. I also thank the 
Democratic leader, who played a major role in this, Senator Harkin, who 
has been working on this issue for many years, and, of course, Senator 
Frist, also, because he has made this a priority and that is why we are 
on the floor. This is an issue in which he obviously has a personal 
interest, with his medical background.
  We should also thank one of the groups that really energized this 
initiative of making lives better through developing the human genome 
and that is the folks at NIH, led by Dr. Francis Collins. They are the 
ones who are going to take this knowledge and disseminate it in a way 
that makes it available to the health community generally and, as a 
result, improve the lives of literally millions of Americans and 
potentially tens of millions of people around the world.
  This is truly an extraordinary breakthrough in science, but it is 
important that it be used right and it is important that it not be used 
in a way that may harm individuals' economic well-being or their 
capacity to get health insurance. That is why this legislation, at the 
beginning, is so important. By having it in place, we will be able to 
energize even more research and more use of the genetic information 
that is available through science today.
  Mr. President, I believe we are ready to vote. I yield back the 
remainder of my time.
  Mr. KENNEDY. Mr. President, I ask unanimous consent to proceed for 10 
seconds.
  The PRESIDING OFFICER. The Senator has time remaining.
  Mr. KENNEDY. I also thank Judy Lichtman, who is president of the 
Coalition for Genetic Fairness. I wanted to mention her name on the 
floor. She did a great deal of work, as well as the coalition. We are 
prepared to vote.
  Mr. DASCHLE. Mr. President, a half-century ago, Drs. Francis Crick 
and James Watson discovered the structure of DNA--a revolutionary 
breakthrough that enabled scientists to begin unraveling the mysteries 
of human life and diseases.
  Earlier this year, scientists at the National Human Genome Research 
Institute celebrated the completion of a massive undertaking begun 10 
years earlier to map the entire human genetic code.
  Our new knowledge about our genetic blueprint has the potential to 
dramatically improve our health and the quality of our lives. It also 
has the potential to destroy lives. Which of those two potentials 
becomes reality depends on whether and how well our laws keep pace with 
changes in technology.
  We know from hearings we held in the Senate that current laws are 
inadequate to protect Americans from genetic discrimination. We also 
know that today Americans are not being tested, not taking advantage of 
medical advances, and not participating in

[[Page 24460]]

genetic research because of their fear of discrimination. Their fears, 
unfortunately, are not unfounded.
  Almost 2 years ago, I met a man named Dave Escher. Mr. Escher had 
worked for the same company for more than 25 years and was a good 
employee. One day, Mr. Escher was told by his employer that he needed 
to see a company doctor; if he refused, he was told he could lose his 
job. So Dave Escher saw the doctor.
  However, it wasn't until after the doctor's appointment--and only by 
accident--that Mr. Escher learned that the company's doctors had used 
his blood to conduct genetic tests for more than 20 medical conditions.
  Stories like Mr. Escher's may be relatively rare today, but experts 
tell us that is largely because genetic testing itself is still 
relatively rare, and because many people are choosing not to take 
genetic tests. As testing becomes more affordable and more common, 
experts say, the incidence of discrimination is likely to increase 
dramatically unless we act to prevent such discrimination.
  Almost two centuries ago, Thomas Jefferson, one of this country's 
foremost scientists and original thinkers, wrote that ``laws and 
institutions must go hand in hand with the progress of the human mind. 
As . . . new discoveries are made [and] new truths disclosed . . . 
institutions must advance also, and keep pace with the times.''
  In this age of genetic breakthroughs, it is essential that our laws 
catch up with the science. We can't afford to take one step forward in 
science but two steps backward in civil rights. Our laws must specify, 
clearly and unambiguously, how genetic information may be used and how 
it may not be used.
  Today, after years of discussion and negotiation, the Senate is 
finally poised to pass bipartisan legislation to protect all Americans 
against the misuse and abuse of genetic information.
  Our bill does three things:
  No. 1, it forbids health insurers from discriminating against 
individuals--denying them coverage, for instance, based on genetic text 
results.
  No. 2, it forbids employers from using genetic information to 
discriminate in hiring, or in the terms and conditions of employment.
  No. 3, it sets privacy standards for access and disclosure of genetic 
information.
  Genetic information should be a private matter--period. It should not 
be shared with employers or insurance companies without an individual's 
consent.
  For years, experts have urged Congress to pass comprehensive national 
standards to protect all Americans from genetic discrimination. If we 
fail to do so, the experts warn, we will almost certainly squander many 
of the enormous potential benefits of the genetic revolution.
  We have been trying to heed that warning for years. I first 
introduced legislation prohibiting genetic discrimination 6 years ago. 
Senator Snowe and many other Senators on both sides of the aisle have 
been working on this important issue for just as long. After countless 
hours of tough negotiations, we have finally arrived at a fair 
resolution that provides important protections for individuals in both 
employment and health insurance.
  Passage of this bill represents a victory for bipartisanship. But 
more importantly, it is a victory for the American people. 
Discrimination based on genetic information is just as arbitrary, just 
as unacceptable, and just as un-American as discrimination based on 
gender, race, religion, or disability. Like those other forms of 
discrimination, it should not be allowed in this country.
  Again, I thank our colleagues who have enabled us to reach this 
compromise and I urge all of our colleagues to support it.
  There are a few people who deserve special recognition. I 
particularly want to thank those Senators who have been working on this 
issue from the beginning and whose contributions were invaluable in 
reaching this compromise, especially Senators Snowe, Kennedy, Harkin, 
Dodd, Jeffords, Frist, Gregg, and Enzi.
  I also want to thank Dr. Francis Collins and the staff at NIH, as 
well as Kathy Hudson, who heads up the Genetics and Public Policy 
Center at Johns Hopkins University. Without their technical expertise 
and their determination to help our laws keep pace with science, we 
would not be here today.
  One other person who must be recognized is our good friend in the 
other body, Congresswoman Louise Slaughter. Her determined leadership 
helped move us forward at every step of the way, and her tenacity and 
expertise will be essential to passage of this legislation in the 
House.
  Nearly 2\1/2\ years ago, in one of his weekly radio addresses, 
President Bush joined in the call for comprehensive protection of 
genetic information. I urge all of our colleagues in the Senate to 
support this well-crafted, bipartisan solution. I also hope that our 
friends in the House will heed the President's words, follow this 
Senate's actions, and pass this bill quickly so we can get it to the 
President for his signature this year.
  We cannot allow the gap between science and the law to continue to 
widen. We all have genetic markers. We are all potentially at risk of 
genetic discrimination. This is not a partisan issue. This is an urgent 
civil rights issue. There is no reason to wait any longer. We have a 
solution. We ought to pass it this year.
  The PRESIDING OFFICER. The majority leader.
  Mr. FRIST. Mr. President, we are about to vote on legislation that 
will provide important new protections against employment and health 
insurance discrimination based on genetic profiling. The bill protects 
Americans from both disease and discrimination.
  We have been working on this legislation for many years, and I am 
pleased today that the Senate is about to act. I expect that today the 
Senate will overwhelmingly pass the genetic information 
nondiscrimination bill.
  I especially, commend my colleagues Senators Snowe, Gregg, Jeffords, 
Daschle, Kennedy, Enzi, Hagel, Collins and DeWine for their hard work 
and dedication over many years.
  Since we began looking at the issue of genetic discrimination, 
genetic scholarship has advanced by leaps and bounds. This year, 
scientists, working in collaboration with the National Human Genome 
Research Institute at the National Institutes of Health, published a 
final draft of the sequence of the entire human genetic code.
  It's a dazzling accomplishment that makes possible unprecedented 
understanding of human development, health and disease. It has the 
potential to change the way we practice medicine.
  Scientists will be able to design drugs to treat specific genes. 
Tissues and organs may be specifically engineered for use in 
transplantation. Preventive care may potentially be based in large part 
on genetic testing. But this new knowledge is also fraught with risk.
  When I first joined Senator Snowe to address the issue of genetic 
discrimination, almost one-third of women offered a test for breast 
cancer risk at the National Institutes of Health declined, citing 
concerns that health insurance companies would discriminate against 
them.
  They were afraid that genetic information gathered to protect them 
from disease might end up hurting their chances to get insurance.
  Their fears were understandable. Genetic screening is a powerful 
tool, and can impart highly sensitive and very personal information. 
The fear of genetic discrimination has the potential to prevent 
individuals from participating in research studies, from taking 
advantage of new genetic technologies, or even from discovering that 
they are not at high risk for genetically related illnesses.
  As a doctor and a Senator, I believe protecting our fellow citizens 
from genetic discrimination is a moral and practical responsibility.
  In the past, Congress has taken on the battle against discrimination, 
most notably through the landmark 1964 Civil Rights Act, the 1990 
Americans with Disabilities Act, and the Health Insurance Portability 
and Accountability Act.

[[Page 24461]]

  This legislation stands squarely on our time-tested civil rights 
laws, establishing comprehensive, consistent, and fair protections.
  Genetic research will make thrilling advances possible in the not too 
distant future, including possible cures to our most vexing illnesses.
  But as we greet the future with new technology and scientific 
discoveries, we must take care to protect our body politic from 
unintended and unanticipated consequences. I am pleased by the progress 
we have made thus far, and I congratulate each of my colleagues on 
their dedication to this issue.
  I strongly support the passage of this bill. It will help protect 
Americans from both discrimination and disease.
  Mr. President, this is a bill we have worked on for the last 7 years. 
It has allowed us to address an issue, the human genome and the 
definition of the code, in advance. Everything we thought back then I 
believe was right on target. It has taken a long time to get to where 
we are today. It has taken a lot of bipartisan work among Senators on 
both sides of the aisle who really came down to wanting to pass a bill 
that did two things; that is, protect the health and the future health 
of individuals in this country and, at the same time, protect from 
discrimination. This bill accomplishes that.
  Again, I congratulate my colleagues for their leadership and 
persistence in passing this bill.
  Mr. GREGG. Mr. President, I ask for the yeas and nays.
  The PRESIDING OFFICER. Is there a sufficient second?
  There is a sufficient second.
  Under the previous order, the bill having been read the third time, 
the question is, Shall the bill, as amended, pass? The clerk will call 
the roll.
  The assistant legislative clerk called the roll.
  Mr. REID. I announce that the Senator from Minnesota (Mr. Dayton), 
the Senator from North Carolina (Mr. Edwards), the Senator from 
Massachusetts (Mr. Kerry), the Senator from Connecticut (Mr. 
Lieberman), and the Senator from Georgia (Mr. Miller) are necessarily 
absent.
  I further announce that, if present and voting, the Senator from 
Massachusetts (Mr. Kerry) would vote ``Yea''.
  The PRESIDING OFFICER (Mr. Crapo). Are there any other Senators in 
the Chamber desiring to vote?
  The result was announced--yeas 95, nays 0, as follows:

                      [Rollcall Vote No. 377 Leg.]

                                YEAS--95

     Akaka
     Alexander
     Allard
     Allen
     Baucus
     Bayh
     Bennett
     Biden
     Bingaman
     Bond
     Boxer
     Breaux
     Brownback
     Bunning
     Burns
     Byrd
     Campbell
     Cantwell
     Carper
     Chafee
     Chambliss
     Clinton
     Cochran
     Coleman
     Collins
     Conrad
     Cornyn
     Corzine
     Craig
     Crapo
     Daschle
     DeWine
     Dodd
     Dole
     Domenici
     Dorgan
     Durbin
     Ensign
     Enzi
     Feingold
     Feinstein
     Fitzgerald
     Frist
     Graham (FL)
     Graham (SC)
     Grassley
     Gregg
     Hagel
     Harkin
     Hatch
     Hollings
     Hutchison
     Inhofe
     Inouye
     Jeffords
     Johnson
     Kennedy
     Kohl
     Kyl
     Landrieu
     Lautenberg
     Leahy
     Levin
     Lincoln
     Lott
     Lugar
     McCain
     McConnell
     Mikulski
     Murkowski
     Murray
     Nelson (FL)
     Nelson (NE)
     Nickles
     Pryor
     Reed
     Reid
     Roberts
     Rockefeller
     Santorum
     Sarbanes
     Schumer
     Sessions
     Shelby
     Smith
     Snowe
     Specter
     Stabenow
     Stevens
     Sununu
     Talent
     Thomas
     Voinovich
     Warner
     Wyden

                             NOT VOTING--5

     Dayton
     Edwards
     Kerry
     Lieberman
     Miller
  The bill (S. 1053), as amended, was passed, as follows:

                                S. 1053

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

       (a) Short Title.--This Act may be cited as the ``Genetic 
     Information Nondiscrimination Act of 2003''.
       (b) Table of Contents.--The table of contents of this Act 
     is as follows:

Sec. 1. Short title; table of contents.
Sec. 2. Findings.

         TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE

Sec. 101. Amendments to Employee Retirement Income Security Act of 
              1974.
Sec. 102. Amendments to the Public Health Service Act.
Sec. 103. Amendments to the Internal Revenue Code of 1986.
Sec. 104. Amendments to title XVIII of the Social Security Act relating 
              to medigap.
Sec. 105. Privacy and confidentiality.
Sec. 106. Assuring coordination.
Sec. 107. Regulations; effective date.

TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC 
                              INFORMATION

Sec. 201. Definitions.
Sec. 202. Employer practices.
Sec. 203. Employment agency practices.
Sec. 204. Labor organization practices.
Sec. 205. Training programs.
Sec. 206. Confidentiality of genetic information.
Sec. 207. Remedies and enforcement.
Sec. 208. Disparate impact.
Sec. 209. Construction.
Sec. 210. Medical information that is not genetic information.
Sec. 211. Regulations.
Sec. 212. Authorization of appropriations.
Sec. 213. Effective date.

                   TITLE III--MISCELLANEOUS PROVISION

Sec. 301. Severability.

     SEC. 2. FINDINGS.

       Congress makes the following findings:
       (1) Deciphering the sequence of the human genome and other 
     advances in genetics open major new opportunities for medical 
     progress. New knowledge about the genetic basis of illness 
     will allow for earlier detection of illnesses, often before 
     symptoms have begun. Genetic testing can allow individuals to 
     take steps to reduce the likelihood that they will contract a 
     particular disorder. New knowledge about genetics may allow 
     for the development of better therapies that are more 
     effective against disease or have fewer side effects than 
     current treatments. These advances give rise to the potential 
     misuse of genetic information to discriminate in health 
     insurance and employment.
       (2) The early science of genetics became the basis of State 
     laws that provided for the sterilization of persons having 
     presumed genetic ``defects'' such as mental retardation, 
     mental disease, epilepsy, blindness, and hearing loss, among 
     other conditions. The first sterilization law was enacted in 
     the State of Indiana in 1907. By 1981, a majority of States 
     adopted sterilization laws to ``correct'' apparent genetic 
     traits or tendencies. Many of these State laws have since 
     been repealed, and many have been modified to include 
     essential constitutional requirements of due process and 
     equal protection. However, the current explosion in the 
     science of genetics, and the history of sterilization laws by 
     the States based on early genetic science, compels 
     Congressional action in this area.
       (3) Although genes are facially neutral markers, many 
     genetic conditions and disorders are associated with 
     particular racial and ethnic groups and gender. Because some 
     genetic traits are most prevalent in particular groups, 
     members of a particular group may be stigmatized or 
     discriminated against as a result of that genetic 
     information. This form of discrimination was evident in the 
     1970s, which saw the advent of programs to screen and 
     identify carriers of sickle cell anemia, a disease which 
     afflicts African-Americans. Once again, State legislatures 
     began to enact discriminatory laws in the area, and in the 
     early 1970s began mandating genetic screening of all African 
     Americans for sickle cell anemia, leading to discrimination 
     and unnecessary fear. To alleviate some of this stigma, 
     Congress in 1972 passed the National Sickle Cell Anemia 
     Control Act, which withholds Federal funding from States 
     unless sickle cell testing is voluntary.
       (4) Congress has been informed of examples of genetic 
     discrimination in the workplace. These include the use of 
     pre-employment genetic screening at Lawrence Berkeley 
     Laboratory, which led to a court decision in favor of the 
     employees in that case Norman-Bloodsaw v. Lawrence Berkeley 
     Laboratory (135 F.3d 1260, 1269 (9th Cir. 1998)). Congress 
     clearly has a compelling public interest in relieving the 
     fear of discrimination and in prohibiting its actual practice 
     in employment and health insurance.
       (5) Federal law addressing genetic discrimination in health 
     insurance and employment is incomplete in both the scope and 
     depth of its protections. Moreover, while many States have 
     enacted some type of genetic non-discrimination law, these 
     laws vary widely with respect to their approach, application, 
     and level of protection. Congress has collected substantial 
     evidence that the American public and the medical community 
     find the existing patchwork of State and Federal laws to be 
     confusing and inadequate to protect them from discrimination. 
     Therefore Federal legislation establishing a national and 
     uniform basic standard is necessary to fully protect the 
     public from discrimination and allay their concerns about

[[Page 24462]]

     the potential for discrimination, thereby allowing 
     individuals to take advantage of genetic testing, 
     technologies, research, and new therapies.

         TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE

     SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT INCOME SECURITY 
                   ACT OF 1974.

       (a) Prohibition of Health Discrimination on the Basis of 
     Genetic Information or Genetic Services.--
       (1) No enrollment restriction for genetic services.--
     Section 702(a)(1)(F) of the Employee Retirement Income 
     Security Act of 1974 (29 U.S.C. 1182(a)(1)(F)) is amended by 
     inserting before the period the following: ``(including 
     information about a request for or receipt of genetic 
     services by an individual or family member of such 
     individual)''.
       (2) No discrimination in group premiums based on genetic 
     information.--Section 702(b) of the Employee Retirement 
     Income Security Act of 1974 (29 U.S.C. 1182(b)) is amended--
       (A) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``except as provided in paragraph (3)''; and
       (B) by adding at the end the following:
       ``(3) No discrimination in group premiums based on genetic 
     information.--For purposes of this section, a group health 
     plan, or a health insurance issuer offering group health 
     insurance coverage in connection with a group health plan, 
     shall not adjust premium or contribution amounts for a group 
     on the basis of genetic information concerning an individual 
     in the group or a family member of the individual (including 
     information about a request for or receipt of genetic 
     services by an individual or family member of such 
     individual).''.
       (b) Limitations on Genetic Testing.--Section 702 of the 
     Employee Retirement Income Security Act of 1974 (29 U.S.C. 
     1182) is amended by adding at the end the following:
       ``(c) Genetic Testing.--
       ``(1) Limitation on requesting or requiring genetic 
     testing.--A group health plan, or a health insurance issuer 
     offering health insurance coverage in connection with a group 
     health plan, shall not request or require an individual or a 
     family member of such individual to undergo a genetic test.
       ``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       ``(A) limit the authority of a health care professional who 
     is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       ``(B) limit the authority of a health care professional who 
     is employed by or affiliated with a group health plan or a 
     health insurance issuer and who is providing health care 
     services to an individual as part of a bona fide wellness 
     program to notify such individual of the availability of a 
     genetic test or to provide information to such individual 
     regarding such genetic test; or
       ``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       ``(d) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), and (c) shall apply to group 
     health plans and health insurance issuers without regard to 
     section 732(a).''.
       (c) Remedies and Enforcement.--Section 502 of the Employee 
     Retirement Income Security Act of 1974 (29 U.S.C. 1132) is 
     amended by adding at the end the following:
       ``(n) Enforcement of Genetic Nondiscrimination 
     Requirements.--
       ``(1) Injunctive relief for irreparable harm.--With respect 
     to any violation of subsection (a)(1)(F), (b)(3), or (c) of 
     section 702, a participant or beneficiary may seek relief 
     under subsection 502(a)(1)(B) prior to the exhaustion of 
     available administrative remedies under section 503 if it is 
     demonstrated to the court, by a preponderance of the 
     evidence, that the exhaustion of such remedies would cause 
     irreparable harm to the health of the participant or 
     beneficiary. Any determinations that already have been made 
     under section 503 in such case, or that are made in such case 
     while an action under this paragraph is pending, shall be 
     given due consideration by the court in any action under this 
     subsection in such case.
       ``(2) Equitable relief for genetic nondiscrimination.--
       ``(A) Reinstatement of benefits where equitable relief has 
     been awarded.--The recovery of benefits by a participant or 
     beneficiary under a civil action under this section may 
     include an administrative penalty under subparagraph (B) and 
     the retroactive reinstatement of coverage under the plan 
     involved to the date on which the participant or beneficiary 
     was denied eligibility for coverage if--
       ``(i) the civil action was commenced under subsection 
     (a)(1)(B); and
       ``(ii) the denial of coverage on which such civil action 
     was based constitutes a violation of subsection (a)(1)(F), 
     (b)(3), or (c) of section 702.
       ``(B) Administrative penalty.--
       ``(i) In general.--An administrator who fails to comply 
     with the requirements of subsection (a)(1)(F), (b)(3), or (c) 
     of section 702 with respect to a participant or beneficiary 
     may, in an action commenced under subsection (a)(1)(B), be 
     personally liable in the discretion of the court, for a 
     penalty in the amount not more than $100 for each day in the 
     noncompliance period.
       ``(ii) Noncompliance period.--For purposes of clause (i), 
     the term `noncompliance period' means the period--

       ``(I) beginning on the date that a failure described in 
     clause (i) occurs; and
       ``(II) ending on the date that such failure is corrected.

       ``(iii) Payment to participant or beneficiary.--A penalty 
     collected under this subparagraph shall be paid to the 
     participant or beneficiary involved.
       ``(3) Secretarial enforcement authority.--
       ``(A) General rule.--The Secretary has the authority to 
     impose a penalty on any failure of a group health plan to 
     meet the requirements of subsection (a)(1)(F), (b)(3), or (c) 
     of section 702.
       ``(B) Amount.--
       ``(i) In general.--The amount of the penalty imposed by 
     subparagraph (A) shall be $100 for each day in the 
     noncompliance period with respect to each individual to whom 
     such failure relates.
       ``(ii) Noncompliance period.--For purposes of this 
     paragraph, the term `noncompliance period' means, with 
     respect to any failure, the period--

       ``(I) beginning on the date such failure first occurs; and
       ``(II) ending on the date such failure is corrected.

       ``(C) Minimum penalties where failure discovered.--
     Notwithstanding clauses (i) and (ii) of subparagraph (D):
       ``(i) In general.--In the case of 1 or more failures with 
     respect to an individual--

       ``(I) which are not corrected before the date on which the 
     plan receives a notice from the Secretary of such violation; 
     and
       ``(II) which occurred or continued during the period 
     involved;

     the amount of penalty imposed by subparagraph (A) by reason 
     of such failures with respect to such individual shall not be 
     less than $2,500.
       ``(ii) Higher minimum penalty where violations are more 
     than de minimis.--To the extent violations for which any 
     person is liable under this paragraph for any year are more 
     than de minimis, clause (i) shall be applied by substituting 
     `$15,000' for `$2,500' with respect to such person.
       ``(D) Limitations.--
       ``(i) Penalty not to apply where failure not discovered 
     exercising reasonable diligence.--No penalty shall be imposed 
     by subparagraph (A) on any failure during any period for 
     which it is established to the satisfaction of the Secretary 
     that the person otherwise liable for such penalty did not 
     know, and exercising reasonable diligence would not have 
     known, that such failure existed.
       ``(ii) Penalty not to apply to failures corrected within 
     certain periods.--No penalty shall be imposed by subparagraph 
     (A) on any failure if--

       ``(I) such failure was due to reasonable cause and not to 
     willful neglect; and
       ``(II) such failure is corrected during the 30-day period 
     beginning on the first date the person otherwise liable for 
     such penalty knew, or exercising reasonable diligence would 
     have known, that such failure existed.

       ``(iii) Overall limitation for unintentional failures.--In 
     the case of failures which are due to reasonable cause and 
     not to willful neglect, the penalty imposed by subparagraph 
     (A) for failures shall not exceed the amount equal to the 
     lesser of--

       ``(I) 10 percent of the aggregate amount paid or incurred 
     by the employer (or predecessor employer) during the 
     preceding taxable year for group health plans; or
       ``(II) $500,000.

       ``(E) Waiver by secretary.--In the case of a failure which 
     is due to reasonable cause and not to willful neglect, the 
     Secretary may waive part or all of the penalty imposed by 
     subparagraph (A) to the extent that the payment of such 
     penalty would be excessive relative to the failure 
     involved.''.
       (d) Definitions.--Section 733(d) of the Employee Retirement 
     Income Security Act of 1974 (29 U.S.C. 1191b(d)) is amended 
     by adding at the end the following:
       ``(5) Family member.--The term `family member' means with 
     respect to an individual--
       ``(A) the spouse of the individual;
       ``(B) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; and
       ``(C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       ``(6) Genetic information.--
       ``(A) In general.--Except as provided in subparagraph (B), 
     the term `genetic information' means information about--
       ``(i) an individual's genetic tests;
       ``(ii) the genetic tests of family members of the 
     individual; or
       ``(iii) the occurrence of a disease or disorder in family 
     members of the individual.
       ``(B) Exclusions.--The term `genetic information' shall not 
     include information about the sex or age of an individual.
       ``(7) Genetic test.--
       ``(A) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.

[[Page 24463]]

       ``(B) Exceptions.--The term `genetic test' does not mean--
       ``(i) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       ``(ii) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.
       ``(8) Genetic services.--The term `genetic services' 
     means--
       ``(A) a genetic test;
       ``(B) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       ``(C) genetic education.''.
       (e) Regulations and Effective Date.--
       (1) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of Labor shall issue 
     final regulations in an accessible format to carry out the 
     amendments made by this section.
       (2) Effective date.--The amendments made by this section 
     shall apply with respect to group health plans for plan years 
     beginning after the date that is 18 months after the date of 
     enactment of this title.

     SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE ACT.

       (a) Amendments Relating to the Group Market.--
       (1) Prohibition of health discrimination on the basis of 
     genetic information or genetic services.--
       (A) No enrollment restriction for genetic services.--
     Section 2702(a)(1)(F) of the Public Health Service Act (42 
     U.S.C. 300gg-1(a)(1)(F)) is amended by inserting before the 
     period the following: ``(including information about a 
     request for or receipt of genetic services by an individual 
     or family member of such individual)''.
       (B) No discrimination in group premiums based on genetic 
     information.--Section 2702(b) of the Public Health Service 
     Act (42 U.S.C. 300gg-1(b)) is amended--
       (i) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``, except as provided in paragraph (3)''; and
       (ii) by adding at the end the following:
       ``(3) No discrimination in group premiums based on genetic 
     information.--For purposes of this section, a group health 
     plan, or a health insurance issuer offering group health 
     insurance coverage in connection with a group health plan, 
     shall not adjust premium or contribution amounts for a group 
     on the basis of genetic information concerning an individual 
     in the group or a family member of the individual (including 
     information about a request for or receipt of genetic 
     services by an individual or family member of such 
     individual).''.
       (2) Limitations on genetic testing.--Section 2702 of the 
     Public Health Service Act (42 U.S.C. 300gg-1) is amended by 
     adding at the end the following:
       ``(c) Genetic Testing.--
       ``(1) Limitation on requesting or requiring genetic 
     testing.--A group health plan, or a health insurance issuer 
     offering health insurance coverage in connection with a group 
     health plan, shall not request or require an individual or a 
     family member of such individual to undergo a genetic test.
       ``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       ``(A) limit the authority of a health care professional who 
     is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       ``(B) limit the authority of a health care professional who 
     is employed by or affiliated with a group health plan or a 
     health insurance issuer and who is providing health care 
     services to an individual as part of a bona fide wellness 
     program to notify such individual of the availability of a 
     genetic test or to provide information to such individual 
     regarding such genetic test; or
       ``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       ``(d) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), and (c) shall apply to group 
     health plans and health insurance issuers without regard to 
     section 2721(a).''.
       (3) Remedies and enforcement.--Section 2722(b) of the 
     Public Health Service Act (42 U.S.C. 300gg-22)(b)) is amended 
     by adding at the end the following:
       ``(3) Enforcement authority relating to genetic 
     discrimination.--
       ``(A) General rule.--In the cases described in paragraph 
     (1), notwithstanding the provisions of paragraph (2)(C), the 
     following provisions shall apply with respect to an action 
     under this subsection by the Secretary with respect to any 
     failure of a health insurance issuer in connection with a 
     group health plan, to meet the requirements of subsection 
     (a)(1)(F), (b)(3), or (c) of section 2702.
       ``(B) Amount.--
       ``(i) In general.--The amount of the penalty imposed under 
     this paragraph shall be $100 for each day in the 
     noncompliance period with respect to each individual to whom 
     such failure relates.
       ``(ii) Noncompliance period.--For purposes of this 
     paragraph, the term `noncompliance period' means, with 
     respect to any failure, the period--

       ``(I) beginning on the date such failure first occurs; and
       ``(II) ending on the date such failure is corrected.

       ``(C) Minimum penalties where failure discovered.--
     Notwithstanding clauses (i) and (ii) of subparagraph (D):
       ``(i) In general.--In the case of 1 or more failures with 
     respect to an individual--

       ``(I) which are not corrected before the date on which the 
     plan receives a notice from the Secretary of such violation; 
     and
       ``(II) which occurred or continued during the period 
     involved;

     the amount of penalty imposed by subparagraph (A) by reason 
     of such failures with respect to such individual shall not be 
     less than $2,500.
       ``(ii) Higher minimum penalty where violations are more 
     than de minimis.--To the extent violations for which any 
     person is liable under this paragraph for any year are more 
     than de minimis, clause (i) shall be applied by substituting 
     `$15,000' for `$2,500' with respect to such person.
       ``(D) Limitations.--
       ``(i) Penalty not to apply where failure not discovered 
     exercising reasonable diligence.--No penalty shall be imposed 
     by subparagraph (A) on any failure during any period for 
     which it is established to the satisfaction of the Secretary 
     that the person otherwise liable for such penalty did not 
     know, and exercising reasonable diligence would not have 
     known, that such failure existed.
       ``(ii) Penalty not to apply to failures corrected within 
     certain periods.--No penalty shall be imposed by subparagraph 
     (A) on any failure if--

       ``(I) such failure was due to reasonable cause and not to 
     willful neglect; and
       ``(II) such failure is corrected during the 30-day period 
     beginning on the first date the person otherwise liable for 
     such penalty knew, or exercising reasonable diligence would 
     have known, that such failure existed.

       ``(iii) Overall limitation for unintentional failures.--In 
     the case of failures which are due to reasonable cause and 
     not to willful neglect, the penalty imposed by subparagraph 
     (A) for failures shall not exceed the amount equal to the 
     lesser of--

       ``(I) 10 percent of the aggregate amount paid or incurred 
     by the employer (or predecessor employer) during the 
     preceding taxable year for group health plans; or
       ``(II) $500,000.

       ``(E) Waiver by secretary.--In the case of a failure which 
     is due to reasonable cause and not to willful neglect, the 
     Secretary may waive part or all of the penalty imposed by 
     subparagraph (A) to the extent that the payment of such 
     penalty would be excessive relative to the failure 
     involved.''.
       (4) Definitions.--Section 2791(d) of the Public Health 
     Service Act (42 U.S.C. 300gg-91(d)) is amended by adding at 
     the end the following:
       ``(15) Family member.--The term `family member' means with 
     respect to an individual--
       ``(A) the spouse of the individual;
       ``(B) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; and
       ``(C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       ``(16) Genetic information.--
       ``(A) In general.--Except as provided in subparagraph (B), 
     the term `genetic information' means information about--
       ``(i) an individual's genetic tests;
       ``(ii) the genetic tests of family members of the 
     individual; or
       ``(iii) the occurrence of a disease or disorder in family 
     members of the individual.
       ``(B) Exclusions.--The term `genetic information' shall not 
     include information about the sex or age of an individual.
       ``(17) Genetic test.--
       ``(A) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       ``(B) Exceptions.--The term `genetic test' does not mean--
       ``(i) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       ``(ii) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.
       ``(18) Genetic services.--The term `genetic services' 
     means--
       ``(A) a genetic test;
       ``(B) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       ``(C) genetic education.''.
       (b) Amendment Relating to the Individual Market.--
       (1) In general.--The first subpart 3 of part B of title 
     XXVII of the Public Health Service Act (42 U.S.C. 300gg-51 et 
     seq.) (relating to other requirements) is amended--
       (A) by redesignating such subpart as subpart 2; and
       (B) by adding at the end the following:

[[Page 24464]]



     ``SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE 
                   BASIS OF GENETIC INFORMATION.

       ``(a) Prohibition on Genetic Information as a Condition of 
     Eligibility.--A health insurance issuer offering health 
     insurance coverage in the individual market may not establish 
     rules for the eligibility (including continued eligibility) 
     of any individual to enroll in individual health insurance 
     coverage based on genetic information (including information 
     about a request for or receipt of genetic services by an 
     individual or family member of such individual).
       ``(b) Prohibition on Genetic Information in Setting Premium 
     Rates.--A health insurance issuer offering health insurance 
     coverage in the individual market shall not adjust premium or 
     contribution amounts for an individual on the basis of 
     genetic information concerning the individual or a family 
     member of the individual (including information about a 
     request for or receipt of genetic services by an individual 
     or family member of such individual).
       ``(c) Genetic Testing.--
       ``(1) Limitation on requesting or requiring genetic 
     testing.--A health insurance issuer offering health insurance 
     coverage in the individual market shall not request or 
     require an individual or a family member of such individual 
     to undergo a genetic test.
       ``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       ``(A) limit the authority of a health care professional who 
     is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       ``(B) limit the authority of a health care professional who 
     is employed by or affiliated with a health insurance issuer 
     and who is providing health care services to an individual as 
     part of a bona fide wellness program to notify such 
     individual of the availability of a genetic test or to 
     provide information to such individual regarding such genetic 
     test; or
       ``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.''.
       (2) Remedies and Enforcement.--Section 2761(b) of the 
     Public Health Service Act (42 U.S.C. 300gg-61)(b)) is amended 
     to read as follows:
       ``(b) Secretarial Enforcement Authority.--The Secretary 
     shall have the same authority in relation to enforcement of 
     the provisions of this part with respect to issuers of health 
     insurance coverage in the individual market in a State as the 
     Secretary has under section 2722(b)(2), and section 
     2722(b)(3) with respect to violations of genetic 
     nondiscrimination provisions, in relation to the enforcement 
     of the provisions of part A with respect to issuers of health 
     insurance coverage in the small group market in the State.''.
       (c) Elimination of Option of Non-Federal Governmental Plans 
     To Be Excepted From Requirements Concerning Genetic 
     Information.--Section 2721(b)(2) of the Public Health Service 
     Act (42 U.S. C. 300gg-21(b)(2)) is amended--
       (1) in subparagraph (A), by striking ``If the plan 
     sponsor'' and inserting ``Except as provided in subparagraph 
     (D), if the plan sponsor''; and
       (2) by adding at the end the following:
       ``(D) Election not applicable to requirements concerning 
     genetic information.--The election described in subparagraph 
     (A) shall not be available with respect to the provisions of 
     subsections (a)(1)(F) and (c) of section 2702 and the 
     provisions of section 2702(b) to the extent that such 
     provisions apply to genetic information (or information about 
     a request for or the receipt of genetic services by an 
     individual or a family member of such individual).''.
       (d) Regulations and Effective Date.--
       (1) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of Labor and the 
     Secretary of Health and Human Services (as the case may be) 
     shall issue final regulations in an accessible format to 
     carry out the amendments made by this section.
       (2) Effective date.--The amendments made by this section 
     shall apply--
       (A) with respect to group health plans, and health 
     insurance coverage offered in connection with group health 
     plans, for plan years beginning after the date that is 18 
     months after the date of enactment of this title; and
       (B) with respect to health insurance coverage offered, 
     sold, issued, renewed, in effect, or operated in the 
     individual market after the date that is 18 months after the 
     date of enactment of this title.

     SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE OF 1986.

       (a) Prohibition of Health Discrimination on the Basis of 
     Genetic Information or Genetic Services.--
       (1) No enrollment restriction for genetic services.--
     Section 9802(a)(1)(F) of the Internal Revenue Code of 1986 is 
     amended by inserting before the period the following: 
     ``(including information about a request for or receipt of 
     genetic services by an individual or family member of such 
     individual)''.
       (2) No discrimination in group premiums based on genetic 
     information.--Section 9802(b) of the Internal Revenue Code of 
     1986 is amended--
       (A) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``, except as provided in paragraph (3)''; and
       (B) by adding at the end the following:
       ``(3) No discrimination in group premiums based on genetic 
     information.--For purposes of this section, a group health 
     plan shall not adjust premium or contribution amounts for a 
     group on the basis of genetic information concerning an 
     individual in the group or a family member of the individual 
     (including information about a request for or receipt of 
     genetic services by an individual or family member of such 
     individual).''.
       (b) Limitations on Genetic Testing.--Section 9802 of the 
     Internal Revenue Code of 1986 is amended by adding at the end 
     the following:
       ``(d) Genetic Testing and Genetic Services.--
       ``(1) Limitation on requesting or requiring genetic 
     testing.--A group health plan shall not request or require an 
     individual or a family member of such individual to undergo a 
     genetic test.
       ``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       ``(A) limit the authority of a health care professional who 
     is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       ``(B) limit the authority of a health care professional who 
     is employed by or affiliated with a group health plan and who 
     is providing health care services to an individual as part of 
     a bona fide wellness program to notify such individual of the 
     availability of a genetic test or to provide information to 
     such individual regarding such genetic test; or
       ``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       ``(e) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), and (d) shall apply to group 
     health plans and health insurance issuers without regard to 
     section 9831(a)(2).''.
       (c) Definitions.--Section 9832(d) of the Internal Revenue 
     Code of 1986 is amended by adding at the end the following:
       ``(6) Family member.--The term `family member' means with 
     respect to an individual--
       ``(A) the spouse of the individual;
       ``(B) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; and
       ``(C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       ``(7) Genetic services.--The term `genetic services' 
     means--
       ``(A) a genetic test;
       ``(B) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       ``(C) genetic education.
       ``(8) Genetic information.--
       ``(A) In general.--Except as provided in subparagraph (B), 
     the term `genetic information' means information about--
       ``(i) an individual's genetic tests;
       ``(ii) the genetic tests of family members of the 
     individual; or
       ``(iii) the occurrence of a disease or disorder in family 
     members of the individual.
       ``(B) Exclusions.--The term `genetic information' shall not 
     include information about the sex or age of an individual.
       ``(9) Genetic test.--
       ``(A) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       ``(B) Exceptions.--The term `genetic test' does not mean--
       ``(i) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       ``(ii) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.''.
       (d) Regulations and Effective Date.--
       (1) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of the Treasury shall 
     issue final regulations in an accessible format to carry out 
     the amendments made by this section.
       (2) Effective date.--The amendments made by this section 
     shall apply with respect to group health plans for plan years 
     beginning after the date that is 18 months after the date of 
     enactment of this title.

     SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SECURITY 
                   ACT RELATING TO MEDIGAP.

       (a) Nondiscrimination.--
       (1) In general.--Section 1882(s)(2) of the Social Security 
     Act (42 U.S.C. 1395ss(s)(2)) is amended by adding at the end 
     the following:
       ``(E)(i) An issuer of a medicare supplemental policy shall 
     not deny or condition the issuance or effectiveness of the 
     policy, and shall not discriminate in the pricing of the 
     policy (including the adjustment of premium rates) of an 
     eligible individual on the basis of genetic information 
     concerning the individual (or information about a request

[[Page 24465]]

     for, or the receipt of, genetic services by such individual 
     or family member of such individual).
       ``(ii) For purposes of clause (i), the terms `family 
     member', `genetic services', and `genetic information' shall 
     have the meanings given such terms in subsection (v).''.
       (2) Effective date.--The amendment made by paragraph (1) 
     shall apply with respect to a policy for policy years 
     beginning after the date that is 18 months after the date of 
     enactment of this Act.
       (b) Limitations on Genetic Testing.--
       (1) In general.--Section 1882 of the Social Security Act 
     (42 U.S.C. 1395ss) is amended by adding at the end the 
     following:
       ``(v) Limitations on Genetic Testing.--
       ``(1) Genetic testing.--
       ``(A) Limitation on requesting or requiring genetic 
     testing.--An issuer of a medicare supplemental policy shall 
     not request or require an individual or a family member of 
     such individual to undergo a genetic test.
       ``(B) Rule of construction.--Nothing in this title shall be 
     construed to--
       ``(i) limit the authority of a health care professional who 
     is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       ``(ii) limit the authority of a health care professional 
     who is employed by or affiliated with an issuer of a medicare 
     supplemental policy and who is providing health care services 
     to an individual as part of a bona fide wellness program to 
     notify such individual of the availability of a genetic test 
     or to provide information to such individual regarding such 
     genetic test; or
       ``(iii) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       ``(2) Definitions.--In this subsection:
       ``(A) Family member.--The term `family member' means with 
     respect to an individual--
       ``(i) the spouse of the individual;
       ``(ii) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; or
       ``(iii) any other individuals related by blood to the 
     individual or to the spouse or child described in clause (i) 
     or (ii).
       ``(B) Genetic information.--
       ``(i) In general.--Except as provided in clause (ii), the 
     term `genetic information' means information about--

       ``(I) an individual's genetic tests;
       ``(II) the genetic tests of family members of the 
     individual; or
       ``(III) the occurrence of a disease or disorder in family 
     members of the individual.

       ``(ii) Exclusions.--The term `genetic information' shall 
     not include information about the sex or age of an 
     individual.
       ``(C) Genetic test.--
       ``(i) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       ``(ii) Exceptions.--The term `genetic test' does not mean--

       ``(I) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       ``(II) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.

       ``(D) Genetic services.--The term `genetic services' 
     means--
       ``(i) a genetic test;
       ``(ii) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       ``(iii) genetic education.
       ``(E) Issuer of a medicare supplemental policy.--The term 
     `issuer of a medicare supplemental policy' includes a third-
     party administrator or other person acting for or on behalf 
     of such issuer.''.
       (2) Conforming amendment.--Section 1882(o) of the Social 
     Security Act (42 U.S.C. 1395ss(o)) is amended by adding at 
     the end the following:
       ``(4) The issuer of the medicare supplemental policy 
     complies with subsection (s)(2)(E) and subsection (v).''.
       (3) Effective date.--The amendments made by this subsection 
     shall apply with respect to an issuer of a medicare 
     supplemental policy for policy years beginning on or after 
     the date that is 18 months after the date of enactment of 
     this Act.
       (c) Transition Provisions.--
       (1) In general.--If the Secretary of Health and Human 
     Services identifies a State as requiring a change to its 
     statutes or regulations to conform its regulatory program to 
     the changes made by this section, the State regulatory 
     program shall not be considered to be out of compliance with 
     the requirements of section 1882 of the Social Security Act 
     due solely to failure to make such change until the date 
     specified in paragraph (4).
       (2) NAIC standards.--If, not later than June 30, 2004, the 
     National Association of Insurance Commissioners (in this 
     subsection referred to as the ``NAIC'') modifies its NAIC 
     Model Regulation relating to section 1882 of the Social 
     Security Act (referred to in such section as the 1991 NAIC 
     Model Regulation, as subsequently modified) to conform to the 
     amendments made by this section, such revised regulation 
     incorporating the modifications shall be considered to be the 
     applicable NAIC model regulation (including the revised NAIC 
     model regulation and the 1991 NAIC Model Regulation) for the 
     purposes of such section.
       (3) Secretary standards.--If the NAIC does not make the 
     modifications described in paragraph (2) within the period 
     specified in such paragraph, the Secretary of Health and 
     Human Services shall, not later than October 1, 2004, make 
     the modifications described in such paragraph and such 
     revised regulation incorporating the modifications shall be 
     considered to be the appropriate regulation for the purposes 
     of such section.
       (4) Date specified.--
       (A) In general.--Subject to subparagraph (B), the date 
     specified in this paragraph for a State is the earlier of--
       (i) the date the State changes its statutes or regulations 
     to conform its regulatory program to the changes made by this 
     section, or
       (ii) October 1, 2004.
       (B) Additional legislative action required.--In the case of 
     a State which the Secretary identifies as--
       (i) requiring State legislation (other than legislation 
     appropriating funds) to conform its regulatory program to the 
     changes made in this section, but
       (ii) having a legislature which is not scheduled to meet in 
     2004 in a legislative session in which such legislation may 
     be considered,

     the date specified in this paragraph is the first day of the 
     first calendar quarter beginning after the close of the first 
     legislative session of the State legislature that begins on 
     or after July 1, 2004. For purposes of the previous sentence, 
     in the case of a State that has a 2-year legislative session, 
     each year of such session shall be deemed to be a separate 
     regular session of the State legislature.

     SEC. 105. PRIVACY AND CONFIDENTIALITY.

       (a) Applicability.--Except as provided in subsection (d), 
     the provisions of this section shall apply to group health 
     plans, health insurance issuers (including issuers in 
     connection with group health plans or individual health 
     coverage), and issuers of medicare supplemental policies, 
     without regard to--
       (1) section 732(a) of the Employee Retirement Income 
     Security Act of 1974 (29 U.S.C. 1191a(a));
       (2) section 2721(a) of the Public Health Service Act (42 
     U.S.C. 300gg-21(a)); and
       (3) section 9831(a)(2) of the Internal Revenue Code of 
     1986.
       (b) Compliance with Certain Confidentiality Standards with 
     Respect to Genetic Information.--
       (1) In general.--The regulations promulgated by the 
     Secretary of Health and Human Services under part C of title 
     XI of the Social Security Act (42 U.S.C. 1320d et seq.) and 
     section 264 of the Health Insurance Portability and 
     Accountability Act of 1996 (42 U.S.C. 1320d-2 note) shall 
     apply to the use or disclosure of genetic information.
       (2) Prohibition on underwriting and premium rating.--
     Notwithstanding paragraph (1), a group health plan, a health 
     insurance issuer, or issuer of a medicare supplemental policy 
     shall not use or disclose genetic information (including 
     information about a request for or a receipt of genetic 
     services by an individual or family member of such 
     individual) for purposes of underwriting, determinations of 
     eligibility to enroll, premium rating, or the creation, 
     renewal or replacement of a plan, contract or coverage for 
     health insurance or health benefits.
       (c) Prohibition on Collection of Genetic Information.--
       (1) In general.--A group health plan, health insurance 
     issuer, or issuer of a medicare supplemental policy shall not 
     request, require, or purchase genetic information (including 
     information about a request for or a receipt of genetic 
     services by an individual or family member of such 
     individual) for purposes of underwriting, determinations of 
     eligibility to enroll, premium rating, or the creation, 
     renewal or replacement of a plan, contract or coverage for 
     health insurance or health benefits.
       (2) Limitation relating to the collection of genetic 
     information prior to enrollment.--A group health plan, health 
     insurance issuer, or issuer of a medicare supplemental policy 
     shall not request, require, or purchase genetic information 
     (including information about a request for or a receipt of 
     genetic services by an individual or family member of such 
     individual) concerning a participant, beneficiary, or 
     enrollee prior to the enrollment, and in connection with such 
     enrollment, of such individual under the plan, coverage, or 
     policy.
       (3) Incidental collection.--Where a group health plan, 
     health insurance issuer, or issuer of a medicare supplemental 
     policy obtains genetic information incidental to the 
     requesting, requiring, or purchasing of other information 
     concerning a participant, beneficiary, or enrollee, such 
     request, requirement, or purchase shall not be considered a 
     violation of this subsection if--
       (A) such request, requirement, or purchase is not in 
     violation of paragraph (1); and
       (B) any genetic information (including information about a 
     request for or receipt of genetic services) requested, 
     required, or purchased is not used or disclosed in violation 
     of subsection (b).

[[Page 24466]]

       (d) Application of Confidentiality Standards.--The 
     provisions of subsections (b) and (c) shall not apply--
       (1) to group health plans, health insurance issuers, or 
     issuers of medicare supplemental policies that are not 
     otherwise covered under the regulations promulgated by the 
     Secretary of Health and Human Services under part C of title 
     XI of the Social Security Act (42 U.S.C. 1320d et seq.) and 
     section 264 of the Health Insurance Portability and 
     Accountability Act of 1996 (42 U.S.C. 1320d-2 note); and
       (2) to genetic information that is not considered to be 
     individually-identifiable health information under the 
     regulations promulgated by the Secretary of Health and Human 
     Services under part C of title XI of the Social Security Act 
     (42 U.S.C. 1320d et seq.) and section 264 of the Health 
     Insurance Portability and Accountability Act of 1996 (42 
     U.S.C. 1320d-2 note).
       (e) Enforcement.--A group health plan, health insurance 
     issuer, or issuer of a medicare supplemental policy that 
     violates a provision of this section shall be subject to the 
     penalties described in sections 1176 and 1177 of the Social 
     Security Act (42 U.S.C. 1320d-5 and 1320d-6) in the same 
     manner and to the same extent that such penalties apply to 
     violations of part C of title XI of such Act.
       (f) Preemption.--
       (1) In general.--A provision or requirement under this 
     section or a regulation promulgated under this section shall 
     supersede any contrary provision of State law unless such 
     provision of State law imposes requirements, standards, or 
     implementation specifications that are more stringent than 
     the requirements, standards, or implementation specifications 
     imposed under this section or such regulations. No penalty, 
     remedy, or cause of action to enforce such a State law that 
     is more stringent shall be preempted by this section.
       (2) Rule of construction.--Nothing in paragraph (1) shall 
     be construed to establish a penalty, remedy, or cause of 
     action under State law if such penalty, remedy, or cause of 
     action is not otherwise available under such State law.
       (g) Coordination with Privacy Regulations.--The Secretary 
     shall implement and administer this section in a manner that 
     is consistent with the implementation and administration by 
     the Secretary of the regulations promulgated by the Secretary 
     of Health and Human Services under part C of title XI of the 
     Social Security Act (42 U.S.C. 1320d et seq.) and section 264 
     of the Health Insurance Portability and Accountability Act of 
     1996 (42 U.S.C. 1320d-2 note).
       (h) Definitions.--In this section:
       (1) Genetic information; genetic services.--The terms 
     ``family member'', ``genetic information'', ``genetic 
     services'', and ``genetic test'' have the meanings given such 
     terms in section 2791 of the Public Health Service Act (42 
     U.S.C. 300gg-91), as amended by this Act.
       (2) Group health plan; health insurance issuer.--The terms 
     ``group health plan'' and ``health insurance issuer'' include 
     only those plans and issuers that are covered under the 
     regulations described in subsection (d)(1).
       (3) Issuer of a medicare supplemental policy.--The term 
     ``issuer of a medicare supplemental policy'' means an issuer 
     described in section 1882 of the Social Security Act (42 
     insert 1395ss).
       (4) Secretary.--The term ``Secretary'' means the Secretary 
     of Health and Human Services.

     SEC. 106. ASSURING COORDINATION.

       (a) In General.--Except as provided in subsection (b), the 
     Secretary of the Treasury, the Secretary of Health and Human 
     Services, and the Secretary of Labor shall ensure, through 
     the execution of an interagency memorandum of understanding 
     among such Secretaries, that--
       (1) regulations, rulings, and interpretations issued by 
     such Secretaries relating to the same matter over which two 
     or more such Secretaries have responsibility under this title 
     (and the amendments made by this title) are administered so 
     as to have the same effect at all times; and
       (2) coordination of policies relating to enforcing the same 
     requirements through such Secretaries in order to have a 
     coordinated enforcement strategy that avoids duplication of 
     enforcement efforts and assigns priorities in enforcement.
       (b) Authority of the Secretary.--The Secretary of Health 
     and Human Services has the sole authority to promulgate 
     regulations to implement section 105.

     SEC. 107. REGULATIONS; EFFECTIVE DATE.

       (a) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of Labor, the 
     Secretary of Health and Human Services, and the Secretary of 
     the Treasury shall issue final regulations in an accessible 
     format to carry out this title.
       (b) Effective Date.--Except as provided in section 104, the 
     amendments made by this title shall take effect on the date 
     that is 18 months after the date of enactment of this Act.

TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC 
                              INFORMATION

     SEC. 201. DEFINITIONS.

       In this title:
       (1) Commission.--The term ``Commission'' means the Equal 
     Employment Opportunity Commission as created by section 705 
     of the Civil Rights Act of 1964 (42 U.S.C. 2000e-4).
       (2) Employee; employer; employment agency; labor 
     organization; member.--
       (A) In general.--The term ``employee'' means--
       (i) an employee (including an applicant), as defined in 
     section 701(f) of the Civil Rights Act of 1964 (42 U.S.C. 
     2000e(f));
       (ii) a State employee (including an applicant) described in 
     section 304(a) of the Government Employee Rights Act of 1991 
     (42 U.S.C. 2000e-16c(a));
       (iii) a covered employee (including an applicant), as 
     defined in section 101 of the Congressional Accountability 
     Act of 1995 (2 U.S.C. 1301);
       (iv) a covered employee (including an applicant), as 
     defined in section 411(c) of title 3, United States Code; or
       (v) an employee or applicant to which section 717(a) of the 
     Civil Rights Act of 1964 (42 U.S.C. 2000e-16(a)) applies.
       (B) Employer.--The term ``employer'' means--
       (i) an employer (as defined in section 701(b) of the Civil 
     Rights Act of 1964 (42 U.S.C. 2000e(b));
       (ii) an entity employing a State employee described in 
     section 304(a) of the Government Employee Rights Act of 1991;
       (iii) an employing office, as defined in section 101 of the 
     Congressional Accountability Act of 1995;
       (iv) an employing office, as defined in section 411(c) of 
     title 3, United States Code; or
       (v) an entity to which section 717(a) of the Civil Rights 
     Act of 1964 applies.
       (C) Employment agency; labor organization.--The terms 
     ``employment agency'' and ``labor organization'' have the 
     meanings given the terms in section 701 of the Civil Rights 
     Act of 1964 (42 U.S.C. 2000e).
       (D) Member.--The term ``member'', with respect to a labor 
     organization, includes an applicant for membership in a labor 
     organization.
       (3) Family member.--The term ``family member'' means with 
     respect to an individual--
       (A) the spouse of the individual;
       (B) a dependent child of the individual, including a child 
     who is born to or placed for adoption with the individual; 
     and
       (C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       (4) Genetic information.--
       (A) In general.--Except as provided in subparagraph (B), 
     the term ``genetic information'' means information about--
       (i) an individual's genetic tests;
       (ii) the genetic tests of family members of the individual; 
     or
       (iii) the occurrence of a disease or disorder in family 
     members of the individual.
       (B) Exceptions.--The term ``genetic information'' shall not 
     include information about the sex or age of an individual.
       (5) Genetic monitoring.--The term ``genetic monitoring'' 
     means the periodic examination of employees to evaluate 
     acquired modifications to their genetic material, such as 
     chromosomal damage or evidence of increased occurrence of 
     mutations, that may have developed in the course of 
     employment due to exposure to toxic substances in the 
     workplace, in order to identify, evaluate, and respond to the 
     effects of or control adverse environmental exposures in the 
     workplace.
       (6) Genetic services.--The term ``genetic services'' 
     means--
       (A) a genetic test;
       (B) genetic counseling (such as obtaining, interpreting or 
     assessing genetic information); or
       (C) genetic education.
       (7) Genetic test.--
       (A) In general.--The term ``genetic test'' means the 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       (B) Exception.--The term ``genetic test'' does not mean an 
     analysis of proteins or metabolites that does not detect 
     genotypes, mutations, or chromosomal changes.

     SEC. 202. EMPLOYER PRACTICES.

       (a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for an employer--
       (1) to fail or refuse to hire or to discharge any employee, 
     or otherwise to discriminate against any employee with 
     respect to the compensation, terms, conditions, or privileges 
     of employment of the employee, because of genetic information 
     with respect to the employee (or information about a request 
     for or the receipt of genetic services by such employee or 
     family member of such employee); or
       (2) to limit, segregate, or classify the employees of the 
     employer in any way that would deprive or tend to deprive any 
     employee of employment opportunities or otherwise adversely 
     affect the status of the employee as an employee, because of 
     genetic information with respect to the employee (or 
     information about a request for or the receipt of genetic 
     services by such employee or family member of such employee).
       (b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for an employer to request, 
     require, or purchase genetic information with respect to an

[[Page 24467]]

     employee or a family member of the employee (or information 
     about a request for the receipt of genetic services by such 
     employee or a family member of such employee) except--
       (1) where an employer inadvertently requests or requires 
     family medical history of the employee or family member of 
     the employee;
       (2) where--
       (A) health or genetic services are offered by the employer, 
     including such services offered as part of a bona fide 
     wellness program;
       (B) the employee provides prior, knowing, voluntary, and 
     written authorization;
       (C) only the employee (or family member if the family 
     member is receiving genetic services) and the licensed health 
     care professional or board certified genetic counselor 
     involved in providing such services receive individually 
     identifiable information concerning the results of such 
     services; and
       (D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the employer except in aggregate terms that do not disclose 
     the identity of specific employees;
       (3) where an employer requests or requires family medical 
     history from the employee to comply with the certification 
     provisions of section 103 of the Family and Medical Leave Act 
     of 1993 (29 U.S.C. 2613) or such requirements under State 
     family and medical leave laws;
       (4) where an employer purchases documents that are 
     commercially and publicly available (including newspapers, 
     magazines, periodicals, and books, but not including medical 
     databases or court records) that include family medical 
     history; or
       (5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       (A) the employer provides written notice of the genetic 
     monitoring to the employee;
       (B)(i) the employee provides prior, knowing, voluntary, and 
     written authorization; or
       (ii) the genetic monitoring is required by Federal or State 
     law;
       (C) the employee is informed of individual monitoring 
     results;
       (D) the monitoring is in compliance with--
       (i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       (ii) State genetic monitoring regulations, in the case of a 
     State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       (E) the employer, excluding any licensed health care 
     professional or board certified genetic counselor that is 
     involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific employees;
       (c) Preservation of protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     SEC. 203. EMPLOYMENT AGENCY PRACTICES.

       (a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for an employment agency--
       (1) to fail or refuse to refer for employment, or otherwise 
     to discriminate against, any individual because of genetic 
     information with respect to the individual (or information 
     about a request for or the receipt of genetic services by 
     such individual or family member of such individual);
       (2) to limit, segregate, or classify individuals or fail or 
     refuse to refer for employment any individual in any way that 
     would deprive or tend to deprive any individual of employment 
     opportunities, or otherwise adversely affect the status of 
     the individual as an employee, because of genetic information 
     with respect to the individual (or information about a 
     request for or the receipt of genetic services by such 
     individual or family member of such individual); or
       (3) to cause or attempt to cause an employer to 
     discriminate against an individual in violation of this 
     title.
       (b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for an employment agency to 
     request, require, or purchase genetic information with 
     respect to an individual or a family member of the individual 
     (or information about a request for the receipt of genetic 
     services by such individual or a family member of such 
     individual) except--
       (1) where an employment agency inadvertently requests or 
     requires family medical history of the individual or family 
     member of the individual;
       (2) where--
       (A) health or genetic services are offered by the 
     employment agency, including such services offered as part of 
     a bona fide wellness program;
       (B) the individual provides prior, knowing, voluntary, and 
     written authorization;
       (C) only the individual (or family member if the family 
     member is receiving genetic services) and the licensed health 
     care professional or board certified genetic counselor 
     involved in providing such services receive individually 
     identifiable information concerning the results of such 
     services; and
       (D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the employment agency except in aggregate terms that do not 
     disclose the identity of specific individuals;
       (3) where an employment agency requests or requires family 
     medical history from the individual to comply with the 
     certification provisions of section 103 of the Family and 
     Medical Leave Act of 1993 (29 U.S.C. 2613) or such 
     requirements under State family and medical leave laws;
       (4) where an employment agency purchases documents that are 
     commercially and publicly available (including newspapers, 
     magazines, periodicals, and books, but not including medical 
     databases or court records) that include family medical 
     history; or
       (5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       (A) the employment agency provides written notice of the 
     genetic monitoring to the individual;
       (B)(i) the individual provides prior, knowing, voluntary, 
     and written authorization; or
       (ii) the genetic monitoring is required by Federal or State 
     law;
       (C) the individual is informed of individual monitoring 
     results;
       (D) the monitoring is in compliance with--
       (i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       (ii) State genetic monitoring regulations, in the case of a 
     State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       (E) the employment agency, excluding any licensed health 
     care professional or board certified genetic counselor that 
     is involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific individuals;
       (c) Preservation of protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     SEC. 204. LABOR ORGANIZATION PRACTICES.

       (a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for a labor organization--
       (1) to exclude or to expel from the membership of the 
     organization, or otherwise to discriminate against, any 
     member because of genetic information with respect to the 
     member (or information about a request for or the receipt of 
     genetic services by such member or family member of such 
     member);
       (2) to limit, segregate, or classify the members of the 
     organization, or fail or refuse to refer for employment any 
     member, in any way that would deprive or tend to deprive any 
     member of employment opportunities, or otherwise adversely 
     affect the status of the member as an employee, because of 
     genetic information with respect to the member (or 
     information about a request for or the receipt of genetic 
     services by such member or family member of such member); or
       (3) to cause or attempt to cause an employer to 
     discriminate against a member in violation of this title.
       (b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for a labor organization to 
     request, require, or purchase genetic information with 
     respect to a member or a family member of the member (or 
     information about a request for the receipt of genetic 
     services by such member or a family member of such member) 
     except--
       (1) where a labor organization inadvertently requests or 
     requires family medical history of the member or family 
     member of the member;
       (2) where--
       (A) health or genetic services are offered by the labor 
     organization, including such services offered as part of a 
     bona fide wellness program;
       (B) the member provides prior, knowing, voluntary, and 
     written authorization;
       (C) only the member (or family member if the family member 
     is receiving genetic services) and the licensed health care 
     professional or board certified genetic counselor involved in 
     providing such services receive individually identifiable 
     information concerning the results of such services; and
       (D) any individually identifiable genetic information 
     provided under subparagraph (C)

[[Page 24468]]

     in connection with the services provided under subparagraph 
     (A) is only available for purposes of such services and shall 
     not be disclosed to the labor organization except in 
     aggregate terms that do not disclose the identity of specific 
     members;
       (3) where a labor organization requests or requires family 
     medical history from the members to comply with the 
     certification provisions of section 103 of the Family and 
     Medical Leave Act of 1993 (29 U.S.C. 2613) or such 
     requirements under State family and medical leave laws;
       (4) where a labor organization purchases documents that are 
     commercially and publicly available (including newspapers, 
     magazines, periodicals, and books, but not including medical 
     databases or court records) that include family medical 
     history; or
       (5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       (A) the labor organization provides written notice of the 
     genetic monitoring to the member;
       (B)(i) the member provides prior, knowing, voluntary, and 
     written authorization; or
       (ii) the genetic monitoring is required by Federal or State 
     law;
       (C) the member is informed of individual monitoring 
     results;
       (D) the monitoring is in compliance with--
       (i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       (ii) State genetic monitoring regulations, in the case of a 
     State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       (E) the labor organization, excluding any licensed health 
     care professional or board certified genetic counselor that 
     is involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific members;
       (c) Preservation of protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     SEC. 205. TRAINING PROGRAMS.

       (a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for any employer, labor organization, or 
     joint labor-management committee controlling apprenticeship 
     or other training or retraining, including on-the-job 
     training programs--
       (1) to discriminate against any individual because of 
     genetic information with respect to the individual (or 
     information about a request for or the receipt of genetic 
     services by such individual or a family member of such 
     individual) in admission to, or employment in, any program 
     established to provide apprenticeship or other training or 
     retraining;
       (2) to limit, segregate, or classify the applicants for or 
     participants in such apprenticeship or other training or 
     retraining, or fail or refuse to refer for employment any 
     individual, in any way that would deprive or tend to deprive 
     any individual of employment opportunities, or otherwise 
     adversely affect the status of the individual as an employee, 
     because of genetic information with respect to the individual 
     (or information about a request for or receipt of genetic 
     services by such individual or family member of such 
     individual); or
       (3) to cause or attempt to cause an employer to 
     discriminate against an applicant for or a participant in 
     such apprenticeship or other training or retraining in 
     violation of this title.
       (b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for an employer, labor 
     organization, or joint labor-management committee described 
     in subsection (a) to request, require, or purchase genetic 
     information with respect to an individual or a family member 
     of the individual (or information about a request for the 
     receipt of genetic services by such individual or a family 
     member of such individual) except--
       (1) where the employer, labor organization, or joint labor-
     management committee inadvertently requests or requires 
     family medical history of the individual or family member of 
     the individual;
       (2) where--
       (A) health or genetic services are offered by the employer, 
     labor organization, or joint labor-management committee, 
     including such services offered as part of a bona fide 
     wellness program;
       (B) the individual provides prior, knowing, voluntary, and 
     written authorization;
       (C) only the individual (or family member if the family 
     member is receiving genetic services) and the licensed health 
     care professional or board certified genetic counselor 
     involved in providing such services receive individually 
     identifiable information concerning the results of such 
     services;
       (D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the employer, labor organization, or joint labor-management 
     committee except in aggregate terms that do not disclose the 
     identity of specific individuals;
       (3) where the employer, labor organization, or joint labor-
     management committee requests or requires family medical 
     history from the individual to comply with the certification 
     provisions of section 103 of the Family and Medical Leave Act 
     of 1993 (29 U.S.C. 2613) or such requirements under State 
     family and medical leave laws;
       (4) where the employer, labor organization, or joint labor-
     management committee purchases documents that are 
     commercially and publicly available (including newspapers, 
     magazines, periodicals, and books, but not including medical 
     databases or court records) that include family medical 
     history; or
       (5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       (A) the employer, labor organization, or joint labor-
     management committee provides written notice of the genetic 
     monitoring to the individual;
       (B)(i) the individual provides prior, knowing, voluntary, 
     and written authorization; or
       (ii) the genetic monitoring is required by Federal or State 
     law;
       (C) the individual is informed of individual monitoring 
     results;
       (D) the monitoring is in compliance with--
       (i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       (ii) State genetic monitoring regulations, in the case of a 
     State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       (E) the employer, labor organization, or joint labor-
     management committee, excluding any licensed health care 
     professional or board certified genetic counselor that is 
     involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific individuals;
       (c) Preservation of protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.

       (a) Treatment of Information as Part of Confidential 
     Medical Record.--If an employer, employment agency, labor 
     organization, or joint labor-management committee possesses 
     genetic information about an employee or member (or 
     information about a request for or receipt of genetic 
     services by such employee or member or family member of such 
     employee or member), such information shall be maintained on 
     separate forms and in separate medical files and be treated 
     as a confidential medical record of the employee or member.
       (b) Limitation on Disclosure.--An employer, employment 
     agency, labor organization, or joint labor-management 
     committee shall not disclose genetic information concerning 
     an employee or member (or information about a request for or 
     receipt of genetic services by such employee or member or 
     family member of such employee or member) except--
       (1) to the employee (or family member if the family member 
     is receiving the genetic services) or member of a labor 
     organization at the request of the employee or member of such 
     organization;
       (2) to an occupational or other health researcher if the 
     research is conducted in compliance with the regulations and 
     protections provided for under part 46 of title 45, Code of 
     Federal Regulations;
       (3) in response to an order of a court, except that--
       (A) the employer, employment agency, labor organization, or 
     joint labor-management committee may disclose only the 
     genetic information expressly authorized by such order; and
       (B) if the court order was secured without the knowledge of 
     the employee or member to whom the information refers, the 
     employer, employment agency, labor organization, or joint 
     labor-management committee shall provide the employee or 
     member with adequate notice to challenge the court order;
       (4) to government officials who are investigating 
     compliance with this title if the information is relevant to 
     the investigation; or
       (5) to the extent that such disclosure is made in 
     connection with the employee's compliance with the 
     certification provisions of section 103 of the Family and 
     Medical Leave Act of 1993 (29 U.S.C. 2613) or such 
     requirements under State family and medical leave laws.

     SEC. 207. REMEDIES AND ENFORCEMENT.

       (a) Employees Covered by Title VII of the Civil Rights Act 
     of 1964.--

[[Page 24469]]

       (1) In general.--The powers, remedies, and procedures 
     provided in sections 705, 706, 707, 709, 710, and 711 of the 
     Civil Rights Act of 1964 (42 U.S.C. 2000e-4 et seq.) to the 
     Commission, the Attorney General, or any person, alleging a 
     violation of title VII of that Act (42 U.S.C. 2000e et seq.) 
     shall be the powers, remedies, and procedures this title 
     provides to the Commission, the Attorney General, or any 
     person, respectively, alleging an unlawful employment 
     practice in violation of this title against an employee 
     described in section 201(2)(A)(i), except as provided in 
     paragraphs (2) and (3).
       (2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the Commission, the 
     Attorney General, or any person, alleging such a practice.
       (3) Damages.--The powers, remedies, and procedures provided 
     in section 1977A of the Revised Statutes (42 U.S.C. 1981a), 
     including the limitations contained in subsection (b)(3) of 
     such section 1977A, shall be powers, remedies, and procedures 
     this title provides to the Commission, the Attorney General, 
     or any person, alleging such a practice (not an employment 
     practice specifically excluded from coverage under section 
     1977A(a)(1) of the Revised Statutes).
       (b) Employees Covered by Government Employee Rights Act of 
     1991.--
       (1) In general.--The powers, remedies, and procedures 
     provided in sections 302 and 304 of the Government Employee 
     Rights Act of 1991 (42 U.S.C. 2000e-16b, 2000e-16c) to the 
     Commission, or any person, alleging a violation of section 
     302(a)(1) of that Act (42 U.S.C. 2000e-16b(a)(1)) shall be 
     the powers, remedies, and procedures this title provides to 
     the Commission, or any person, respectively, alleging an 
     unlawful employment practice in violation of this title 
     against an employee described in section 201(2)(A)(ii), 
     except as provided in paragraphs (2) and (3).
       (2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the Commission, or any 
     person, alleging such a practice.
       (3) Damages.--The powers, remedies, and procedures provided 
     in section 1977A of the Revised Statutes (42 U.S.C. 1981a), 
     including the limitations contained in subsection (b)(3) of 
     such section 1977A, shall be powers, remedies, and procedures 
     this title provides to the Commission, or any person, 
     alleging such a practice (not an employment practice 
     specifically excluded from coverage under section 1977A(a)(1) 
     of the Revised Statutes).
       (c) Employees Covered by Congressional Accountability Act 
     of 1995.--
       (1) In general.--The powers, remedies, and procedures 
     provided in the Congressional Accountability Act of 1995 (2 
     U.S.C. 1301 et seq.) to the Board (as defined in section 101 
     of that Act (2 U.S.C. 1301)), or any person, alleging a 
     violation of section 201(a)(1) of that Act (42 U.S.C. 
     1311(a)(1)) shall be the powers, remedies, and procedures 
     this title provides to that Board, or any person, alleging an 
     unlawful employment practice in violation of this title 
     against an employee described in section 201(2)(A)(iii), 
     except as provided in paragraphs (2) and (3).
       (2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to that Board, or any 
     person, alleging such a practice.
       (3) Damages.--The powers, remedies, and procedures provided 
     in section 1977A of the Revised Statutes (42 U.S.C. 1981a), 
     including the limitations contained in subsection (b)(3) of 
     such section 1977A, shall be powers, remedies, and procedures 
     this title provides to that Board, or any person, alleging 
     such a practice (not an employment practice specifically 
     excluded from coverage under section 1977A(a)(1) of the 
     Revised Statutes).
       (4) Other applicable provisions.--With respect to a claim 
     alleging a practice described in paragraph (1), title III of 
     the Congressional Accountability Act of 1995 (2 U.S.C. 1381 
     et seq.) shall apply in the same manner as such title applies 
     with respect to a claim alleging a violation of section 
     201(a)(1) of such Act (2 U.S.C. 1311(a)(1)).
       (d) Employees Covered by Chapter 5 of title 3, United 
     States Code.--
       (1) In general.--The powers, remedies, and procedures 
     provided in chapter 5 of title 3, United States Code, to the 
     President, the Commission, the Merit Systems Protection 
     Board, or any person, alleging a violation of section 
     411(a)(1) of that title, shall be the powers, remedies, and 
     procedures this title provides to the President, the 
     Commission, such Board, or any person, respectively, alleging 
     an unlawful employment practice in violation of this title 
     against an employee described in section 201(2)(A)(iv), 
     except as provided in paragraphs (2) and (3).
       (2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the President, the 
     Commission, such Board, or any person, alleging such a 
     practice.
       (3) Damages.--The powers, remedies, and procedures provided 
     in section 1977A of the Revised Statutes (42 U.S.C. 1981a), 
     including the limitations contained in subsection (b)(3) of 
     such section 1977A, shall be powers, remedies, and procedures 
     this title provides to the President, the Commission, such 
     Board, or any person, alleging such a practice (not an 
     employment practice specifically excluded from coverage under 
     section 1977A(a)(1) of the Revised Statutes).
       (e) Employees Covered by Section 717 of the Civil Rights 
     Act of 1964.--
       (1) In general.--The powers, remedies, and procedures 
     provided in section 717 of the Civil Rights Act of 1964 (42 
     U.S.C. 2000e-16) to the Commission, the Attorney General, the 
     Librarian of Congress, or any person, alleging a violation of 
     that section shall be the powers, remedies, and procedures 
     this title provides to the Commission, the Attorney General, 
     the Librarian of Congress, or any person, respectively, 
     alleging an unlawful employment practice in violation of this 
     title against an employee or applicant described in section 
     201(2)(A)(v), except as provided in paragraphs (2) and (3).
       (2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the Commission, the 
     Attorney General, the Librarian of Congress, or any person, 
     alleging such a practice.
       (3) Damages.--The powers, remedies, and procedures provided 
     in section 1977A of the Revised Statutes (42 U.S.C. 1981a), 
     including the limitations contained in subsection (b)(3) of 
     such section 1977A, shall be powers, remedies, and procedures 
     this title provides to the Commission, the Attorney General, 
     the Librarian of Congress, or any person, alleging such a 
     practice (not an employment practice specifically excluded 
     from coverage under section 1977A(a)(1) of the Revised 
     Statutes).
       (f) Definition.--In this section, the term ``Commission'' 
     means the Equal Employment Opportunity Commission.

     SEC. 208. DISPARATE IMPACT.

       (a) General Rule.--Notwithstanding any other provision of 
     this Act, ``disparate impact'', as that term is used in 
     section 703(k) of the Civil Rights Act of 1964 (42 U.S.C. 
     2000e-d(k)), on the basis of genetic information does not 
     establish a cause of action under this Act.
       (b) Commission.--On the date that is 6 years after the date 
     of enactment of this Act, there shall be established a 
     commission, to be known as the Genetic Nondiscrimination 
     Study Commission (referred to in this section as the 
     ``Commission'') to review the developing science of genetics 
     and to make recommendations to Congress regarding whether to 
     provide a disparate impact cause of action under this Act.
       (c) Membership.--
       (1) In general.--The Commission shall be composed of 8 
     members, of which--
       (A) 1 member shall be appointed by the Majority Leader of 
     the Senate;
       (B) 1 member shall be appointed by the Minority Leader of 
     the Senate;
       (C) 1 member shall be appointed by the Chairman of the 
     Committee on Health, Education, Labor, and Pensions of the 
     Senate;
       (D) 1 member shall be appointed by the ranking minority 
     member of the Committee on Health, Education, Labor, and 
     Pensions of the Senate;
       (E) 1 member shall be appointed by the Speaker of the House 
     of Representatives;
       (F) 1 member shall be appointed by the Minority Leader of 
     the House of Representatives;
       (G) 1 member shall be appointed by the Chairman of the 
     Committee on Education and the Workforce of the House of 
     Representatives; and
       (H) 1 member shall be appointed by the ranking minority 
     member of the Committee on Education and the Workforce of the 
     House of Representatives.
       (2) Compensation and expenses.--The members of the 
     Commission shall not receive compensation for the performance 
     of services for the Commission, but shall be allowed travel 
     expenses, including per diem in lieu of subsistence, at rates 
     authorized for employees of agencies under subchapter I of 
     chapter 57 of title 5, United States Code, while away from 
     their homes or regular places of business in the performance 
     of services for the Commission.
       (d) Administrative Provisions.--
       (1) Location.--The Commission shall be located in a 
     facility maintained by the Equal Employment Opportunity 
     Commission.
       (2) Detail of government employees.--Any Federal Government 
     employee may be detailed to the Commission without 
     reimbursement, and such detail shall be without interruption 
     or loss of civil service status or privilege.
       (3) Information from federal agencies.--The Commission may 
     secure directly from any Federal department or agency such 
     information as the Commission considers necessary to carry 
     out the provisions of this section. Upon request of the 
     Commission, the head of such department or agency shall 
     furnish such information to the Commission.
       (4) Hearings.--The Commission may hold such hearings, sit 
     and act at such times and

[[Page 24470]]

     places, take such testimony, and receive such evidence as the 
     Commission considers advisable to carry out the objectives of 
     this section, except that, to the extent possible, the 
     Commission shall use existing data and research.
       (5) Postal services.--The Commission may use the United 
     States mails in the same manner and under the same conditions 
     as other departments and agencies of the Federal Government.
       (e) Report.--Not later than 1 year after all of the members 
     are appointed to the Commission under subsection (c)(1), the 
     Commission shall submit to Congress a report that summarizes 
     the findings of the Commission and makes such recommendations 
     for legislation as are consistent with this Act.
       (f) Authorization of Appropriations.--There are authorized 
     to be appropriated to the Equal Employment Opportunity 
     Commission such sums as may be necessary to carry out this 
     section.

     SEC. 209. CONSTRUCTION.

       Nothing in this title shall be construed to--
       (1) limit the rights or protections of an individual under 
     the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 
     et seq.), including coverage afforded to individuals under 
     section 102 of such Act (42 U.S.C. 12112), or under the 
     Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.);
       (2)(A) limit the rights or protections of an individual to 
     bring an action under this title against an employer, 
     employment agency, labor organization, or joint labor-
     management committee for a violation of this title; or
       (B) establish a violation under this title for an employer, 
     employment agency, labor organization, or joint labor-
     management committee of a provision of the amendments made by 
     title I;
       (3) limit the rights or protections of an individual under 
     any other Federal or State statute that provides equal or 
     greater protection to an individual than the rights or 
     protections provided for under this title;
       (4) apply to the Armed Forces Repository of Specimen 
     Samples for the Identification of Remains;
       (5) limit or expand the protections, rights, or obligations 
     of employees or employers under applicable workers' 
     compensation laws;
       (6) limit the authority of a Federal department or agency 
     to conduct or sponsor occupational or other health research 
     that is conducted in compliance with the regulations 
     contained in part 46 of title 45, Code of Federal Regulations 
     (or any corresponding or similar regulation or rule); and
       (7) limit the statutory or regulatory authority of the 
     Occupational Safety and Health Administration or the Mine 
     Safety and Health Administration to promulgate or enforce 
     workplace safety and health laws and regulations.

     SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC 
                   INFORMATION.

       An employer, employment agency, labor organization, or 
     joint labor-management committee shall not be considered to 
     be in violation of this title based on the use, acquisition, 
     or disclosure of medical information that is not genetic 
     information about a manifested disease, disorder, or 
     pathological condition of an employee or member, including a 
     manifested disease, disorder, or pathological condition that 
     has or may have a genetic basis.

     SEC. 211. REGULATIONS.

       Not later than 1 year after the date of enactment of this 
     title, the Commission shall issue final regulations in an 
     accessible format to carry out this title.

     SEC. 212. AUTHORIZATION OF APPROPRIATIONS.

       There are authorized to be appropriated such sums as may be 
     necessary to carry out this title (except for section 208).

     SEC. 213. EFFECTIVE DATE.

       This title takes effect on the date that is 18 months after 
     the date of enactment of this Act.

                   TITLE III--MISCELLANEOUS PROVISION

     SEC. 301. SEVERABILITY.

       If any provision of this Act, an amendment made by this 
     Act, or the application of such provision or amendment to any 
     person or circumstance is held to be unconstitutional, the 
     remainder of this Act, the amendments made by this Act, and 
     the application of such provisions to any person or 
     circumstance shall not be affected thereby.

  Mr. STEVENS. I move to reconsider the vote and I move to lay that 
motion on the table.
  The motion to lay on the table was agreed to.

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