06 May 2012

Genetic Discrimination

'GINA, Privacy, and Antisubordination' by Bradley Areheart in 46 Georgia Law Review (2012) 705-718 considers the US Genetic Information Nondiscrimination Act (GINA).

Arehart comments that -
This Essay briefly considers both the current and optimal role of privacy in employment discrimination jurisprudence. The recently passed  is illustrative of one way to value privacy through employment discrimination mandates. In particular, GINA includes a prohibition on the use of genetic information in all employment decisions, affording a measure of genetic privacy to potential and current employees.
GINA stands in contrast to prior employment discrimination statutes, which have often encouraged or required employers to be knowledgeable of and consider particular identity traits through policies such as reasonable accommodation and affirmative action, and the disparate impact doctrine. There is thus a tension between privacy and effectuating certain employment discrimination policies that are directed toward antisubordination ends. After exploring the tension that sometimes exists between privacy and antisubordination, this Essay argues that, in the statutory areas of the Americans with Disabilities Act and GINA, foregoing privacy is often desirable in order to fight subordination by employees revealing, and employers considering, particular health traits and information.
He goes on to argue that -
Disclosure of private information may be preferable to silent subordination. The best example of this is found in the ADA’s doctrine of reasonable accommodation. A disabled employee whose illness or condition is exacerbated by current working conditions has two choices: to stay quiet about her disability (and, thus, preserve privacy if her employer has no knowledge of the condition) or to voluntarily approach the employer, disclose the condition, and suggest a reasonable accommodation that would allow her to remain able to perform the essential functions of the job. In such a situation a tension exists between privacy and the need to ameliorate one’s subordinating situation. Yet, the ADA’s emphasis on reasonable accommodation implies that self- disclosure of one’s disability is worth the loss of privacy. There is no obvious reason why we ought to treat genetic information differently — even though the information pertains to a health condition that has not yet manifested itself. GINA, in this context, has both the potential to fight genetic discrimination and to prevent some disabilities. 
GINA should encourage the voluntary self-disclosure of genetic conditions under certain circumstances. As with the ADA, people should be able to choose to disclose their health-related (genetic) information — permitting an employer to consider that information — when it would benefit them. Requiring employers to consider voluntarily-disclosed genetic information in certain contexts would allow individuals to benefit from genetic testing and not fear discrimination. For example, providing the right to a genetic-based reasonable accommodation would encourage applicants and employees to undergo genetic testing and think carefully about what they can do to protect their future health— which may well include seeking a reasonable accommodation. 
Additionally, encouraging openness about genetic information may spur solidarity among those who are predisposed to dire physical conditions. This point ties into the earlier suggestion regarding genetic diversity initiatives. Keeping genetic information private could lead those who have certain “negative” genes to feel stigmatized and cause the public to underappreciate the commonality of having a predisposition to one or more debilitating conditions. Much like it is important for people to realize that disability exists on a continuum and that we will all be disabled if we live long enough, the public must understand that everyone has genes — some good and some bad — and society must insist on nondiscrimination for all. 
One might question whether GINA should facilitate disclosure of genetic information for antisubordination ends at a time when genetic discrimination is not yet common. This same question might be asked of the statute generally: Why provide protection from genetic discrimination before it is widespread? One answer is found in GINA’s legislative findings. Given this country’s history of eugenic-based immigration and sterilization laws in the 1920s and the influx of mandatory testing for sickle cell anemia in the 1970s—and given that knowledge of genetics is rapidly expanding—being preemptive instead of reactionary makes sense. 
A second answer is that laws have symbolic value, which transcends any immediate practical consequences. In particular, antidiscrimination laws have an expressive function, which has historically, and gradually, helped change private parties’ attitudes about particular identity traits. In the expressive context, GINA’s enactment signals both a particular valuation of genetic information as well as a general emphasis on protecting immutable traits as part of the antidiscrimination project. Accordingly, augmenting the statute to give greater protections — even at the expense of privacy — has both future instrumental value and current expressive value. If the political will exists to secure “negative” (or anticlassificationist) rights for genetic information, why not also now provide “positive” (or antisubordination-based) rights? 
One might also question whether permitting the use of genetic information for the specified purposes is too injurious to privacy. While this short Essay is only intended to be exploratory and cannot possibly weigh the competing normative considerations that inhere in privacy and antisubordination, it is worth noting that a handful of de jure exceptions already exist that allow an employer to legally discover genetic information, such as when a company includes genetic tests in a company-sponsored wellness program or genetically monitors the biological effects of toxic substances in the workplace. Such exceptions suggest that any genetic privacy secured through GINA was not intended to be absolute, but instead, balanced against other considerations. 
The most notable exception to GINA’s proscription of employer acquisition of genetic information, however, is a de facto one. Under the ADA, employers may lawfully require individuals to release all of their health records once a conditional offer of employment has been made. The purpose of this provision is to allow the employer to ensure the individual can perform the essential functions of the job with or without reasonable accommodation. If the records were to indicate that the individual is likely to be unable to perform the essential functions of the job, the offer could be withdrawn. Even if an employer were to request only nongenetic health information, it is commonplace for custodians to release all of an individual’s health records. Any injury to privacy furthered by this Essay’s recommendations would thus only be incremental. Moreover, the recommendations herein contemplate only voluntary disclosure. An employer could not compel the information that would, for example, constitute the basis for a reasonable accommodation.