Congressional legislation allowing companies to push their employees to undergo genetic testing and requiring them to disclose the results has received House committee approval (1). HR 1313 was written to better align the stipulations of the Genetic Information Nondiscrimination Act of 2008 (2) and Americans with Disabilities Act of 1990 with current workplace wellness programs. Supporting testimony by the American Benefits Council, an organization of benefits providers, expressed concern that existing laws inhibit the capacity of wellness programs to improve employee health and productivity.
Genetic data given to companies will be ‘de-identified’ to protect the privacy of the participating employees. However, if the genetic information is anonymous it is not easy to see how it could substantially improve corporate wellness programs. If wellness program-mandated genetic testing can’t help much why would companies want to underwrite it and use financial ploys to coerce employee compliance? Genetic information is valuable.
Perhaps one way to profit in the near term from genetic data would be to offer marketers groups of potential consumers known to have undergone genetic testing. Although employers would receive anonymous results, third-party genetic service providers would have the full information (1) offering them some potentially lucrative sales opportunities. For example, a company marketing cancer treatment services might specifically seek persons with genes such as BRCA1 and BRCA2 which increase the risk of breast and ovarian cancer development (3). Or maybe marketers of long-term health care insurance would be interested in persons known to harbor APOE4 genes which increase the threat of Alzheimer’s disease and other health issues (4). These marketers would know they are appealing directly to consumers fully aware of their status because they have undergone genetic testing.
At first glance, acquiring DNA sequence information appears to be a windfall for wellness programs. Being able to identify potential problems and taking preventative actions before they become health threats would clearly benefit enrollees. However, a DNA sequence is not necessarily destiny and many diseases are the result of a complex mix of heredity, environment and behaviors. That means genetic testing alone will be unable to flag in advance the emergence of most disease. However, access to employee genetic data might improve corporate wellness immediately.
Efforts to ‘repeal and replace’ the Affordable Care Act, sometimes known as Obamacare are underway. HR 1313 seeks to alter the provisions of The Genetic Information Nondiscrimination Act put in place to protect and reassure the public about new technologies. These efforts remind us that political climates can change and when they do, rules, regulations and safeguards may be eliminated with a stroke of the legislative pen. Many of us may soon face decisions as to whether to acquiesce to new demands to invade our genetic privacy. In the long term, if citizens decide new technologies have become unwelcome intrusions into their private lives we may all lose far more than some few will ever gain.
(1) S. Begley. 2017. House Republicans Would Let Employers Demand Workers’ Genetic Test Results. STAT, 10 March 2017. https://www.statnews.com/2017/03/10/workplace-wellness-genetic-testing/
(2) The Genetic Information Nondiscrimination Act http://ginahelp.org/