[Congressional Record Volume 141, Number 181 (Wednesday, November 15, 1995)]
[Senate]
[Pages S17096-S17097]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. HATFIELD (for himself and Mr. Mack):
  S. 1416. A bill to establish limitation with respect to the 
disclosure and use of genetic information, and for other purposes; to 
the Committee on Labor and Human Resources.


                    the genetic privacy act of 1995

 Mr. HATFIELD. Madam President, recent breakthroughs in science 
have brought great hopes in the area of genetics. The human genome 
project is proceeding with the goal of mapping and sequencing every 
gene in the human body. The potential of identifying disease 
characteristics through their genetic makeup brings great hope to those 
suffering from an array of diseases such as Huntington disease, 
Alzheimer's disease, cystic fibrosis, and breast cancer. Unfortunately, 
these advances also raise profound ethical, legal, and social questions 
relating to access to genetic testing, insurability, employability, and 
confidentiality.
  While many doctors are offering genetic testing to patients with a 
history of a genetic-related disease to identify their own risk, many 
patients and physicians are not capable of dealing with the 
consequences of this information. For example, is the patient required 
to share this information with the health insurance company? How about 
their employer? Does the physician have an obligation to share this 
information? 

[[Page S17097]]
There have already been cases of discrimination as a result of an 
employer learning of an employee's genetic risk. In addition, cases 
have arisen where health insurance access was denied as a result of a 
genetic predisposition.
  This is problematic because we are only in the first stages of 
understanding the human genome. Genetic testing has proven effective in 
some cases but it can be argued that the presence of a gene or certain 
genetic characteristics will not always result in the onset of the 
particular illness. The potential for discrimination is great. Although 
several States, including my own State of Oregon, have begun to address 
the issue of genetic information and health insurance, there are 
currently no Federal laws governing the use of genetic information.
  The legislation that I am introducing today with my colleague, 
Senator Mack, is modeled on the Genetic Privacy Act recently passed by 
the Oregon Legislature. It also draws on recommendations made by the 
NIH-sponsored ELSI Working Group and the National Action Plan on Breast 
Cancer.
  The purpose of the Genetic Privacy Act of 1995 is to establish some 
initial limitations with respect to the disclosure and use of genetic 
information with the goal of balancing the need to protect the rights 
of the individual against society's interests. The bill is intended as 
a first step--to ensure that there are some Federal standards in place 
in the most critical areas of concern. I see it as a working draft to 
be refined as the science progresses. The bill would define the rights 
of individuals whose genetic information is disclosed. In addition, it 
would protect against discrimination by an insurer or employer based 
upon an individual's genetic characteristics.
  First, the bill prohibits the disclosure of genetic information by 
anyone without the specific written authorization of the individual. 
This disclosure provision could apply to health care professionals, 
health care institutions, laboratories, researchers, employers 
insurance companies, and law enforcement officials. The written 
authorization must include a description of the information being 
disclosed, the name of the individual or entity to whom the disclosure 
is being made, and the purpose of the disclosure. This provision 
preserves the individual's ability to control the disclosure of his or 
her genetic information. There are several exceptions for the purposes 
of criminal or death investigations, specific orders of Federal or 
State courts for civil actions, paternity establishment, specific 
authorization by the individual, genetic information relating to a 
decedent for the medical diagnosis of blood relatives of the decedent, 
or identifying bodies.
  Second, the legislation prohibits employers from seeking to obtain or 
use genetic information of an employee or prospective employee in order 
to discriminate against that person. In March 1995, the U.S. Equal 
Employment Opportunity Commission [EEOC] released official guidance on 
the definition of the term ``disability''. The EEOC's guidance 
clarifies that protection under the Americans With Disabilities Act 
extends to individuals who are discriminated against in employment 
decisions based solely on genetic information. Issuance of the EEOC's 
guidance is precedent setting--it is the first Federal protection 
against the unfair use of genetic information. The provision included 
in the bill is intended to reiterate the ruling of the EEOC and make it 
clear that this practice would be prohibited under Federal law.

  Third, the legislation prohibits health insurers from using genetic 
information to reject, deny, limit, cancel, refuse to renew, increase 
rates, or otherwise affect health insurance. This is in line with 
changes that are currently under consideration with regard to health 
insurance and preexisting condition exclusions.
  A study of genetic discrimination prepared by Paul R. Billings, M.D. 
and cited by the NIH-DOE ELSI Working Group in their report entitled 
``Genetic Information and Health Insurance,'' indicates that there have 
been a number of cases of discrimination already as the result of an 
insurer learning of an individual's genetic predisposition. One woman 
who was found to carry the gene that causes cystic fibrosis was told 
she and her children were not insurable unless her husband was 
determined not to carry the cystic fibrosis gene. She went without 
health insurance for several months while this was determined. In 
another case, a man diagnosed with Huntington disease was denied health 
insurance on the basis that it was a preexisting condition, even though 
no previous diagnosis of Huntington had been made.
  As the prevalence of genetic testing spreads, so does the risks of 
discrimination. Women found to carry the gene that indicates breast 
cancer susceptibility, BRCA1, fear they will lose health coverage if 
their insurer finds out. However, having this information may provide 
early treatment and prevention options for the woman. The provision 
relating to health insurance in the bill will provide much needed 
assurance to individuals with genetic predispositions. This will ensure 
that they will not risk losing their health coverage when they need it 
the most.
  Finally, the bill requires the recently established National 
Bioethics Advisory Commission to submit to Congress their 
recommendations on further protections for the collection, storage, and 
use of DNA samples and genetic information obtained from those samples, 
and appropriate standards for the acquisition and retention of genetic 
information in all settings. This provision is intended to ensure that 
the social consequences of genome research are considered as the 
technology develops and not after the fact.
  Madam President, as I said previously, this is a first step. This 
bill addresses the most pressing concerns surrounding genetic testing 
and the disclosure of genetic information as they relate to health 
insurer and employer discrimination. I believe this is a good beginning 
and I hope my colleagues will join me in supporting this important 
legislation.

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