When Public Health and Genetic Privacy Collide: Positive and Normative Theories Explaining How ACA's Expansion of Corporate Wellness Programs Conflicts with GINA's Privacy Rules


  • Jennifer S. Bard

    1. Alvin R. Allison Professor of Law and Director of the Health Law and J.D./M.D. Programs at Texas Tech University School of Law and an Adjunct Associate Professor in the department of psychiatry at the Texas Tech University School of Medicine as well as a Senior Research Fellow at the Texas Tech University Ethics Center.
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The Patient Protection and Affordable Care Act of 2010 (ACA) contains many provisions intended to increase access to and lower the cost of health care by adopting public health measures. One of these promotes the use of at-work wellness programs by both providing employers with grants to develop these programs and also increasing their ability to tie the price employees pay for health insurance for participating in these programs and meeting specific health goals. Yet despite ACA's specific alteration of three different statues which had in the past shielded employees from having to contribute to the cost of their health insurance based on their achieving employer-designated health markers, it chose to leave alone recently enacted rules implementing the Genetic Non-Discrimination Act (GINA), which prohibits employers from asking employees about their family health history in any context, including assessing their risk for setting wellness targets. This article reviews how both the changes made by ACA and the restrictions recently put place by GINA will affect the way employers are likely to structure Wellness Programs. It also considers how these changes reflect the competing social goals of both ACA, which seeks to expand access to the population by lowering costs, and GINA, which seeks to protect individuals from discrimination. It does so by analyzing both positive theories about how these new laws will function and normative theories explaining the likelihood of future friction between the interests of the population of the United States as a whole who are in need of increased and affordable access to health care, and of the individuals living in this country who risk discrimination, as science and medicine continue to make advances in linking genetic make-up to risk of future illness.