Should Employers and Insurance Companies Be Allowed to Gain Access to Our Genetic Information?
General Reference (not clearly pro or con)
The Office of Legislative Policy and Analysis (OLPA) explained the bill “S. 306 – The Genetic Information Nondiscrimination Act of 2005,” in its Bill Tracking section (accessed Apr. 20, 2005):
“[T]he bill. S. 306 would prohibit discrimination in health insurance and employment on the basis of predictive genetic information.
The bill would prohibit health insurers in both the group and individual markets from
(1) using genetic information to impose enrollment restrictions or to adjust premium or contribution amounts,
(2) requesting genetic testing or results except as necessary for treatment, payment, or health care operations, or
(3) requesting or requiring the use of genetic information for the purposes of underwriting.
It defines a genetic test as an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes.”Apr. 20, 2005
The Genetic Information Nondiscrimination in Employment (GINE) Coalition wrote in a Feb. 8, 2005 letter about “The Genetic Information Nondiscrimination Act of 2005 (S.306)”:
“Legislating based on theoretical discrimination and predictions of future behavior… is fraught with opportunities for unintended consequences, unnecessary regulation, and unwarranted litigation. It also sets a new precedent, as Congress has never created a new cause of action against employers based on potential or theoretical discrimination, only on some appreciable history of actual discrimination…
This is particularly important given that the Americans With Disabilities Act (ADA) and the regulations under the Health Insurance Portability and Accountability Act (HIPAA) already provide significant protections against collection, disclosure, and discrimination based on medical information, including any medical information containing genetic information.”Feb. 8, 2005
Tony Strattner, Special Project Editor at Bio-IT World, wrote in his Nov. 7, 2003 article “Kill Bill – The GIN Act, That Is”:
“The economic law of unintended consequences means that GINA is destined to hurt the very people it claims to help because it will produce less of what it promises to ensure – jobs and insurance…
If consistently predictive genetic information relevant to job performance is denied employers, however, they will surely resort to other, legal means to offset the costs of that prohibited information… Insurance premiums will likewise rise with the higher costs imposed by a prohibition on any information that helps insurers manage risk… Why? Because prohibition will become a handmaiden to fraud…
There is already sufficient legal protection against genetic discrimination in the workplace, as well as public insurance for those who may be ineligible for private coverage. The economic costs of broadly suppressing free flows of genetic information far outweigh the marginal risks posed by that information.”Nov. 7, 2003
FuturePundit’s editor, Randall Parker, wrote in his Oct. 16, 2003 article “US Senate DNA Privacy Vote Will Have Unintended Consequences”:
“Any effort that seeks to prevent people from taking advantage of useful information will cause harmful consequences… If particular genetic profiles turn out to make some people more likely to break down under physically dangerous stressful situations then… under this proposed law employers [would] be banned from using that information…
But how would this bill work in practice? Some day personal DNA sequencing will become very cheap and most people in developed countries will be able to afford to have their complete genome sequenced… [T]hose people who are most at risk for getting sick will sign up for more medical coverage and those at lower risk for serious illness will sign up for less coverage on average… If individuals know their risks and the insurance companies do not then people will be able to game the system. The result will be fewer customers for medical insurance and those who do seek it will be at greater risk of getting sick.”Oct. 16, 2003
The American Civil Liberties Union (ACLU) posted the July 25, 2001 “Statement of Legislative Consultant Ron Weich on Genetic Privacy and Non-Discrimination for the Senate Health, Education, Labor, and Pensions Committee”:
“The ACLU supports [the future Genetic Information Nondiscrimination Act (GINA)] because it meaningfully addresses the serious threat to civil liberties posed by new genetic technology. It prohibits genetic discrimination in all aspects of employment, including hiring and compensation. It prohibits insurers from restricting enrollment or adjusting fees on the basis of genetic information. And it prohibits both insurers and employers from requiring genetic testing…
It has been suggested… that… the Americans with Disabilities Act (‘ADA’) already prohibits employment discrimination based on genetic information… Unfortunately a series of court decisions… has narrowly defined the term ‘disability’… and has thereby limited the scope of ADA protections.
Individuals who are symptomatic but not disabled can no longer rely on the protection of the ADA, and individuals with a genetic predisposition to an illness that has not yet manifested itself are also likely to fall outside the ADA’s protected class.”July 25, 2001
The US Senate voted unanimously on Feb. 17, 2005 to pass S. 306 the Genetic Information Nondiscrimination Act of 2005:
“A bill to prohibit discrimination on the basis of genetic information with respect to health insurance and employment…
Vote Counts:Feb. 17, 2005
Not Voting 2″
The National Human Genome Research Institute’s (NHGRI) Director, Dr. Francis S. Collins, MD, PhD, stated in his Feb. 17, 2005 “Regarding the Passage of Genetic Information Nondiscrimination Act of 2005 (S. 306)” commentary:
“Since the completion of the Human Genome Project in 2003, we have seen a crescendo of advances in medical research. We have seen the development of new diagnostic tests, preventive strategies, and treatments for genetically based diseases. I am concerned, however, that this progress will be greatly hampered if the American people do not feel comfortable obtaining genetic information about themselves. S. 306 will clearly protect all of us from genetic discrimination in health insurance and employment, and would free the American people from the fear of such discrimination…
No one should lose their job because of the genes they inherited. No one should be denied health insurance because of their DNA. But genetic discrimination affects more than jobs and insurance. It also slows the pace of science.”Feb. 17, 2005
The Coalition for Genetic Fairness stated in a document titled, “Why Is Genetic Information Nondiscrimination Legislation Needed?” posted on its website (accessed Mar. 2, 2006):
“There are a few states with strict protections against genetic discrimination, but most states have little to no protection… Current HIPAA guidelines do not prohibit insurers from requiring genetic testing or from denying coverage based on genetic information. In fact, GINA is filling holes in HIPAA, making the whole legislation more consistent with regard to data protection. Genetic information is becoming increasingly more ingrained in medicine and as such will serve to complicate privacy law if steps are not taken now to close gaps in policy…
An overwhelming majority of Americans (85%) believe that if someone has a genetic test, their employer should NOT have the right to know the results. Republicans, democrats, and individuals from all racial and ethnic groups, religions, and income and education levels share this opinion.”Mar. 2, 2006