By: Lilias Gordon,

The movie Gattaca came out in 1997, starring Jude Law, Ethan Hawke, and Uma Thurman. Based in the “not-to-distant-future,” employment discrimination is no longer about race, sex, or any other protected class. Rather, a person’s genetic code is the only determining factor for school admissions and employment options. Discrimination is now a science.[1]

Fear of genetic discrimination was not limited to science fiction, becoming a public concern in the late 90’s and early 2000’s. In the early 2000’s, the Human Genome Project finished sequencing the human genome. Media, scientists, and legislators all created a public perception of a pending landslide of discrimination and privacy invasions.[2] Spurred on by this fear, many states created statutes barring genetic discrimination.[3] Despite all this collective concern, there is still no consensus on what exactly is the legal issue surrounding genetic discrimination — or, if this is a problem at all.

Congress followed suit in 2008, passing the Genetic Information Nondiscrimination Act (GINA).[4] The substantive provisions of GINA were geared towards preventing healthcare providers from making decisions based on genetic information.[5] GINA bars insurers from discriminating based on a person’s likelihood of developing a genetic disease; thus individuals are only protected if they are asymptomatic.[6] However, in almost ten years, under 200 cases have litigated this statute, with about a quarter of these cases coming out of the 4th Circuit. For example, in 2013, there were 333 employment discrimination complaints filed based on GINA, compared to 90,000 based on everything else.[7] Most of the genetic discrimination concerns born in the 90’s and early 2000’s have not matured into real legal problems.

Legal theorists have asserted that —while disseminating personal genetic information is a huge risk— this is not a discrimination issue. Genetic information is better understood as creating privacy concerns by compromising the autonomy of an individual by foreclosing opportunities on the basis of genetic characteristics.[8] This suggests that mapping the civil rights model onto a brand new type of discrimination will hamper society’s ability to deal with the problem.[9] Said another way, our intuition that this is a discrimination issue is wrong.

Genetic discrimination may become more of a problem as technology advances. Perhaps we just have not yet reached the “not-to-distant-future.” “As technological advances increasingly permit detection of subtle physiological changes, the line between using genetic information and non-genetic medical information will become more and more difficult to police.”[10] There is no clear scientific distinction between genetic information and non-genetic information, despite the fact GINA turns on this difference. However, this is still a far cry from a Gattaca-esque fear. Or, perhaps the real harm is this irrational fear itself, which is slowing down potentially life-saving research. Mass genetic testing may be incredibly valuable, aiding genetic disease research and treatment development.[11] People are reluctant to undergo genetic testing out of fear of discrimination, which leads to less data for disease research.[12]

In the intervening decades since genetic discrimination became a concern, there has been a lot of legislation, but little case law and arguably only a fraction of the landslide of discrimination we expected. While the lofty problems we anticipated have not materialized, genetic discrimination has recently become a real-life concern, garnering much public attention.

Anyone following politics has heard the term “preexisting condition” thrown around in relation to healthcare debates. GINA does not protect a person as soon as they become symptomatic. However, GINA does not exactly define what symptomatic means.[13] Because the Affordable Care Act covers most preexisting conditions, this definition was never really tested.[14] Without the ACA, GINA will be the only way to make sure healthcare companies cover preexisting conditions. Because GINA has no clear definition of symptomatic, stripping healthcare laws could allow your genetics to become a preexisting condition.

 

[1] Gattaca (Sony Pictures Entertainment 1997).

[2] Sonia M. Suter, The Allure and Peril of Genetic Exceptionalism: Do We Need Special Genetic Legislation?, 79 Wash. U. L. Q. 669, 676 (2001).

[3] Karen Rothenberg, Genetic Information and Health Insurance: State Legislative Approaches, 23 J. L. Med. & Ethics 312, 313 (1995).

[4] Genetic Information Nondiscrimination Act of 2008, 110 P.L. 233, 122 Stat. 881.

[5] Marion Crain, Pauling Kim & Micheal Selmi, Work Law: And Case Materials 430 (Carolina Academic Press 3rd ed.) (2015).

[6] GINA § 102(b).

[7] Adam Rogers, The House Health Plan Makes Your Genes a Preexisting Condition, Wired Magazine (May 4, 2017, 7:55 PM) https://www.wired.com/2017/05/house-health-plan-makes-genes-preexisting-condition/.

[8] Pauline T. Kim, Genetic Discrimination, Genetic Privacy: Rethinking Employee Protection for a Brave New Workplace, 96 Nw. U.L. Rev. 1497, 1498 (2002); Suter, supra note 1, at 747.

[9] Kim, supra note 9, at 1498.

[10] Crain, supra note 5, at 432.

[11] Id at 430.

[12] Id.

[13] Rogers, supra note 6.

[14] Id.

Image Source: http://www.councilforresponsiblegenetics.org/blog/post/Protecting-Genetic-Data-A-Primer-for-Employers.aspx.