[Congressional Record Volume 143, Number 30 (Tuesday, March 11, 1997)]
[Senate]
[Pages S2140-S2142]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DOMENICI (for himself, Mr. Jeffords, and Mr. Dodd):
  S. 422. A bill to define the circumstances under which DNA samples 
may be collected, stored, and analyzed, and genetic information may be 
collected, stored, analyzed, and disclosed, to define the rights of 
individuals and persons with respect to genetic information, to define 
the responsibilities of persons with respect to genetic information, to 
protect individuals and families from genetic discrimination, to 
establish uniform rules that protect individual genetic privacy, and to 
establish effective mechanisms to enforce the rights and 
responsibilities established under this act; to the Committee on Labor 
and Human Resources.


     THE GENETIC CONFIDENTIALITY AND NONDISCRIMINATION ACT OF 1997

  Mr. DOMENICI. Mr. President, fellow Senators, I rise today to 
introduce a measure, the title of which will be the Genetic 
Confidentiality and Nondiscrimination Act of 1997.
  Let me just suggest, during the last 2 weeks at every turn we have 
seen and heard reports of the latest achievements in the advancement of 
genetic technologies. Man has been controlling the genetics of domestic 
animals and plants for many thousands of years, but the latest 
announcements about the cloning of sheep and monkeys have been 
particularly dramatic. Most of the drama arises from the media 
speculation that follows about the possibility of cloning human beings.
  Such an event is widely viewed as next to impossible because the 
scientific community and officers of Federal funding and oversight 
vigorously reject the concept of creating genetic copies of human 
beings. But what these new events do bring home to us, and what is of 
significance to us, is that genetics is important in our daily lives 
now.
  Let me suggest that the time has come to protect information about 
human genetics that has been obtained by researchers or otherwise from 
individual human beings, individual citizens of this country.
  I have a rather detailed bill, in which Senator Dodd is joining me, 
as is Senator Jeffords, the chairman of the Labor, Health and Human 
Resources Committee. This will actually say that what we are going to 
have to get is the consent of the person whose genetic information we 
intend to use in almost any way. We know that genetic information is 
just as significant as fingerprints of the past in terms of identifying 
people.
  Much can be determined about a person's life, about a person's 
future, from genetic information. Now is the time to have a serious 
debate in the U.S. Congress about how that information should be 
protected. The bill which I introduce will begin that dialogue in the 
appropriate committee.
  I send to the desk the bill. For those who have been giving us 
constructive information about it, this is the very last draft after 
many people in industry, in the biotechnology community, and in the 
community of genetics have given us information. I have a side by side 
on this bill and a detailed statement explaining it. I send them all to 
the desk and ask that the bill be referred to the appropriate 
committee.
  Now I yield to my good friend, Senator Dodd, from Connecticut.
  Mr. DODD. Mr. President, I thank my colleague for yielding. Let me 
begin my brief remarks by commending our colleague from New Mexico for, 
once again, taking leadership on a significant health issue. I have had 
the privilege, Mr. President, of working with my colleague from New 
Mexico, Senator Domenici, on numerous issues, most recently things like 
frivolous lawsuits and mental health. I am delighted to join him as a 
principal cosponsor of this proposal of the Genetic Confidentiality and 
Nondiscrimination Act of 1997.
  Mr. President, this legislation is critically important. It deals 
with basic concerns that people have today. It is of critical 
importance to our country, important to individuals and to researchers. 
We are not claiming here this is perfect, but the kind of work that 
Senator Domenici has done already, in communication with those who 
would be most directly interested in the legislation, I think has taken 
us a long way.
  We are fortunate, Mr. President, to live in an extraordinary--an 
extraordinary--crossroads in the history of our Nation and, indeed, of 
our species. I can only compare it, Mr. President, to the dawn of the 
nuclear age. Then, by the elemental act of splitting an atom, we became 
able to generate seemingly unlimited energy but, also, as we all know, 
the ability to destroy all forms of human life.
  Today, Mr. President, we stand at the dawn of the genetic age and 
once again confront heretofore unknown power over our destiny on this 
small planet. The recent reports of the cloning of mammals places this 
power in sharp relief. Within a few short years, Mr. President, the 
human genome project will decipher the entire human genetic code. The 
entire genetic human code will be deciphered in our lifetime, providing 
a blueprint of a human being's most personal and potent information.
  This blueprint, Mr. President, will hopefully allow us to understand 
and remedy illnesses in all its forms. We are already reaping some of 
the benefits of this newfound knowledge of our genetic makeup. Genetic 
testing, as many are already aware, is available for several serious 
diseases and illnesses, including breast cancer and colon cancer. Armed 
with this genetic information, individuals can take additional steps to 
safeguard their health. For instance, more frequent screenings and 
checkups.

  However, Mr. President, it will allow the exploitation of the human 
frailty to which one might be genetically predisposed, and concerns 
have been raised about the privacy of this information. Many Americans 
are concerned that dissemination of this information could lead to job 
discrimination and difficulty in getting or maintaining health 
insurance or life insurance. These are important issues.
  Clearly, in this area of increasing medical technology, we must be 
able to ensure a balance between scientific advancement and the privacy 
rights of individuals. This bill that my colleague from New Mexico has 
offered begins that critical process. It requires strict informed 
consent procedures while allowing genetic scientific research to 
continue. Specifically, this legislation provides protections against 
unwarranted disclosure of genetic information to employers and 
insurance companies.
  Mr. President, I am cosponsoring this legislation because I believe 
it is important that we address these issues today rather than wait. I 
know some have voiced concerns about this legislation. We hear them. We 
recognize this is a complex area of law with many important interests 
at stake. In fact, Mr. President, we will be having a hearing in the 
Labor Committee this week on the issue of cloning, to which

[[Page S2141]]

our colleague from New Mexico will be testifying--not specifically 
about this bill, but I suspect this bill may be the subject of some 
dialog in that hearing.
  So we are already beginning to look to try and raise the questions 
that people, I think, would want us to address, protecting people's 
privacy rights, so that that information that we are able to glean will 
not be misused. I think this is an important step in that effort. I 
commend my colleague from New Mexico. I am delighted to cosponsor his 
bill.
  The PRESIDING OFFICER. The time has expired.
  Mr. DOMENICI. I ask unanimous consent for an additional minute.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. DOMENICI. Mr. President, I did not, in my statement, mean to tie 
cloning into this bill. It is just that all of that is part of this 
explosion of the science of genetics and its application for various 
aspects of both human and animal life in America and in the world.
  Let me suggest that if we are going to continue research, we have 
this major American project called the Genome Project wherein all of 
the chromosomes of the human being are going to be mapped, all 23 pairs 
of them. We will know where most of the diseases are located within the 
chromosome system of the human being. Our scientists can then take this 
information and begin the long journey toward curing most of 
humankind's serious diseases over time.
  While all that is going on, the one thing we do not need, we do not 
need an abuse of the information by either researchers, scientists, 
insurance companies or the like, such that it would excite the American 
people to turn against such research. One thing we ought to do in that 
regard is pass some kind of protection for genetic information. That is 
what this bill attempts to do.
  Obviously, there is a whole field of ethics that must be really put 
together and nourished across the land regarding this, or we will cause 
breakouts to occur in terms of abuse of genetic information, all of 
which could be very harmful to the greatest wellness effort in 
humankind, in human history. That is, finding out the basic genetic 
structure of the human being.
  Mr. President, during the past 2 weeks, at every turn, we have been 
seen and heard reports of the latest achievement in the advance of 
genetic technologies. Man has been controlling the genetics of domestic 
animals and plants for many thousands of years, but the latest 
announcements about cloning sheep and monkeys have been particularly 
dramatic. And most of the drama arises from the media speculation that 
follows about the possibility of cloning humans. Such an event is 
widely viewed as next to impossible because the scientific community 
and offices of Federal funding and oversight vigorously reject the 
concept of creating genetic copies of human beings. But what these new 
events do bring home to us is the grave significance of genetics in our 
daily lives.
  I rise today to revisit a timely and momentous issue in the discovery 
and elucidation of human genetic information--the issue of genetic 
confidentiality and nondiscrimination.
  The human genome project is rapidly proceeding toward its goal of 
deciphering the human genetic code. Current projections tell us that 
the goal of reading the entire genetic script of 3 billion nucleotides 
and some 100,000 genes of the human genome will be reached by the year 
2005, which will be several years earlier than was initially projected 
when the project was undertaken in 1990.
  When the project is complete, we will have knowledge of man's 
complete genetic blueprint--a blueprint that is the most personal and 
most private information that any human being can have.
  We will have a wealth of knowledge of how our countless individual 
traits are determined. And perhaps more important, we will have 
fundamental knowledge about the 3,000 or more genes that can cause 
sickness and sometimes even death. And we will have realized one of 
mankind's greatest scientific achievements.
  At the time the human genome project was first brought to my 
attention 11 years ago, I realized that deciphering our genetic code 
would have immense implications for our medical welfare. But equally 
important, if not more so, were the implications of genetic information 
with respect to ethics and the law. This is why I insisted that the 
budget for the human genome project include funds specifically 
allocated for addressing the ethical, legal, and social implications of 
our new genetic technologies.
  Now that we have the know-how to generate genetic information on 
individuals and their families, we find ourselves asking some very 
basic questions about who has a right to control access to personal 
genetic information. Should our personal physicians know this 
information? Our families and friends? Our insurers and employers? As 
we begin to consider these questions, we find that they are deeply 
troublesome issues that reach into the lives of many Americans.

  Today I place before you a bill that addresses the broad issues of 
genetic confidentiality and nondiscrimination. This legislation will 
affirm the right of the individual to have some control over his or her 
most personal information. To be sure, much of our genetic information 
is similar--even identical--among all human beings. This is what makes 
us all members of the family of man. But much of our genetic 
information is also unique--it is the information that makes each human 
distinct from all others. And it is information that can be deciphered 
from cells in a drop of blood or cells that are stored in a laboratory 
after we have medical tests.
  Our personal and unique genetic information is the essence of our 
individuality. And today we seek to protect this information from 
public scrutiny or disclosure without the express consent of the 
individual who is the source of the information.
  So, today, I, and my colleagues, Senator Jeffords and Senator Dodd 
introduce the Genetic Confidentiality and Nondiscrimination Act of 
1997. This legislation is designed to reinforce the statutes that some 
19 state legislatures have enacted. This legislation echoes the 
concerns of many of my colleagues in this Chamber as we all seek to 
come to grips with this pressing and ubiquitous issue. I hope that this 
bill will invite exhaustive debate and legislative review, so that we 
will achieve a firm national standard for individual privacy with 
respect to genetic information.
  The bill that I introduce today focuses on two areas of serious 
concern.
  The first issue is the relationship between the interests of genetics 
research and the individuals who selflessly participate as subjects in 
hundreds of genetics research projects. The past year, 1996, witnessed 
the 50th anniversary of the birth of the Nuremberg Code and the public 
acknowledgement of the doctrine of informed consent for participation 
in research. Over this half century, we have repeatedly affirmed the 
right of the individual to be fully informed about any research project 
that he or she is asked to participate in and to give voluntary consent 
to participation.
  In this present bill we will extend the concept of informed consent 
to give each individual the right to control the deciphering of his or 
her most personal information and the disclosure of that information to 
other persons. And we will create a partnership between researchers and 
the people--the subjects--who are the foundation of research in 
genetics.

  We might consider a recent example of genetic testing that was 
carried out on a collection of samples that had been retained for some 
years in a genetics laboratory. These samples had been gathered for the 
purpose of detecting carriers of a recessive gene for Tay Sachs 
disease, a disease that invariably causes the death of infants who get 
a double dose of the gene, one from each parent. The more recent 
question concerned the frequency of one of the breast cancer genes in 
that population. So samples that were originally collected for one 
purpose were later used for another purpose, without the permission of 
the people who had donated the samples and without the possibility of 
getting any new information back to the people who had donated the 
samples.
  Both protection and partnership are critical as we continue to define 
our genetic legacies, particularly because

[[Page S2142]]

genetics has implications in many facets of our everyday lives, 
including medicine, employment, insurance, education, forensics, 
finance, and even our own self-perceptions.
  The second issue addressed in this legislation is the relationship 
between individuals, on the one hand, and employers and health 
insurers, on the other. This legislation will very simply preclude 
employers or health insurers from requesting or requiring genotype 
information as a condition of employment or health insurance.
  Many people in our society have already been discriminated against 
because other people had access to information about their genes. We 
want to avoid any more situations in which healthy people are denied 
employment or insurance when they disclose information about their 
genes. Consider, for example, the man who acknowledged that he had 
genes for hemochromatosis. This is a disease that can be devastating if 
untreated, but it can be successfully treated. This man was 
successfully treated and was completely healthy, but he was denied 
insurance simply because of his genes, and this should not happen.
  We do, however, carve out one exception to the general rule, for 
protecting employees and coworkers from hazardous conditions or 
situations in the workplace. For example, an employer may have a valid 
reason to know whether an employee has a genetic susceptibility to a 
certain chemical that is a part of the work environment. So the 
exception allows a request for genetic information if it is a matter of 
immediate business necessity.
  I would like to be very clear that this legislation does not make it 
illegal to collect, or store, or analyze, or even disclose, an 
individual's genetic information. It simply gives the individual 
control over this process through a rigorous procedure for written, 
informed consent. The only exceptions for individual control are 
questions of compulsory process, such as criminal investigations, or 
court-ordered analyses.

  Specifically, the purposes of this legislation are:
  First, to define the circumstances under which DNA samples and 
genetic information may be collected, stored, analyzed, and disclosed; 
second, to define the rights of individuals with respect to genetic 
information; third, to define the responsibilities of third parties 
with respect to genetic information; fourth, to protect individuals and 
families from genetic discrimination; and fifth, to establish uniform 
rules that protect individual genetic privacy.
  The need for this legislation is clear and pressing. I look forward 
to working with my colleagues in the Senate and in the House to bring 
this issue to a satisfactory resolution for the American people. The 
Human Genome Project holds the greatest promise of benefits for 
mankind, but these benefits will elude us if people are afraid of the 
consequences of deciphering their own genetic formulas.
  I forward a summary of this bill to the desk and ask unanimous 
consent that it be printed in the Record at the conclusion of my 
remarks.
                                 ______