Steve May: The future genetic ghetto – VTDigger – vtdigger.org

Editors note: This commentary is by Steve May, who is a member of the Richmond Selectboard and a licensed independent clinical social worker. He has served previously as a national director of state Affairs for the Hemophilia Federation of America and is founder of The Forum on Genetic Equity, a national organization on genetic bias.

H.R.1313 (the Preserving Employee Wellness Programs Act) passed markup out of the House Ways and Means Committee on a party line vote with 22 Republicans voting for the bill and 17 Democrats voting against it. While the bill hasnt gotten anywhere near the attention the repeal of the Affordable Care Act has, overturning genetic privacy rules would have every bit as consequential an impact. H.R.1313 would permit genetic testing to be rolled into workplace wellness programs.

Obama era laws and regulations permitted for certain workplace wellness programs to be voluntary. The degree by which it would be voluntary going forward serves as something of an open question. There is a consensus amongst hiring managers and HR professionals that the only programs which are truly effective are the ones which target costly chronic and genetic conditions. Employers in targeting these would gain two significant pieces of information. Through enrollment and utilization they could target those who are healthy and identify those who have reason to believe they are not.

People with genetic conditions will either not be hired or hired at lower wages than they otherwise would have received as their employers and thus their insurers now know with less uncertainty future medical expense obligations.

These programs through coercive activity or incentive would create an opt-in and present little concern for those who are well. They would present their own genotype eagerly, demonstrating their own genetic wellbeing. Even a voluntary system shifts the onus onto those who for one reason or another chooses to not participate. Second, though opting out these employers would get genetic profiles with highly probable high cost diseases flagged. Far more dangerous to workers would be ones decision to not participate. While voluntary, these programs intend to compel individual participation by employers. If the cost of non-participation is high, that is a very valuable signal that the non-participating person has a damn good reason to not participate. And now they have demonstrated that they are not a team player which is really a proxy for a high likelihood of having a high probability of having a high cost genetically influenced condition. So people with genetic conditions will either not be hired or hired at lower wages than they otherwise would have received as their employers and thus their insurers now know with less uncertainty future medical expense obligations.

Following more than a decade of consultation, lobbying and advocacy, a Democratic Congress passed and a Republican president enthusiastically supported, championed and signed the Genetic Information Non-discrimination Act (GINA) in 2008. GINA is widely considered to have been the first major civil rights law of our new century; and it has successfully managed to safeguard the genetic privacy rights of every American every day for the last decade. The American Society for Human Genetics has come out against the passage of H.R.1313 because it would effectively repeal the fundamental genetic and health privacy protections in GINA and the Americans with Disabilities Act. Passage of H.R.1313 would permit workplace wellness programs to ask employees questions about genetic tests taken by themselves or their families, and to make inquiries about the medical history of employees, their spouses, their children, and other family members as employees. It is foreseeable that hiring and promotion decisions could depend on the results of genetic testing.

Under existing law, an employer may not ask a potential employee to take a genetic test as a condition of employment. That is to say they cannot pit two roughly equal applicants against one another and then consider the genetic factors and future affliction that might affect eventual employment. Supposing that you might be a carrier for BRCA-1, the genetic marker associated with breast cancer and another candidate may not, that single factor alone may be determinative in whether you get a job or a future promotion. It must be pointed out that simply being a carrier for a genetic condition does not mean that one necessarily will experience onset in most cases. In spite of that fact however, hiring managers can make employment decisions based on potential future health care costs in choosing one candidate over another.

Perhaps even more concerning is the potential for the discovery of a genetic predisposition, like Huntingtons disease. For that individual, somebody who will almost definitely contract the medical condition much later in life, (but not for several decades) the prospect of genetic profiling is downright harrowing. Huntingtons or Parkinsons will present if detected on one genetic profile, but the discovery of its existence may not affect ones health and wellbeing when it is discovered on a healthy individuals profile removed by many decades from actual onset for a given individual. In this case, the intervening event impacting ones health may be completely different, and human resource professionals, hiring managers and employers are ill-equipped to make decisions about the complex science of genomics and therefore use a disclosure as the basis to preclude one from the employment pool. Equally distressing is the idea that health insurance companies would be permitted to use genetic information and big data to inform patterns of underwriting in health insurance.

In the absence of GINA, genetic profiling could be used to determine health insurance rates. Currently, nothing precludes insurance companies from using this data in underwriting life, long-term care and disability insurance as policy makers have historically trailed badly behind this emerging technology. We dont redline neighborhoods anymore, why would we permit the formation of virtual genetic ghettos? Using factors like: race, class, gender, socio-economic status to inform patterns of underwriting in insurance products is bad public policy, why would using genetic predispositions in the form of genotyping be any better?

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Steve May: The future genetic ghetto - VTDigger - vtdigger.org