Violation of privacy brought to you by Rep. Elise Stefanik

Rep. Elise Stefanik (Photo provided)

On March 7, Rep. Elise Stefanik co-sponsored H.R. 1313, the so-called “Preserving Employee Wellness Programs Act.” This Orwellian proposal has little to do with preserving anything since employee wellness programs are in no danger of going away. Rather, the main pillar of the act allows insurance companies to add genetic testing to their wellness program requirements, overturning earlier protections afforded by the Genetic Information Nondisclosure Act, which President George W. Bush signed into law in 2008. GINA prohibited discrimination of any type based upon one’s genetic information.

Should Rep. Stefanik’s bill become law, employers will be free to require that employees submit genetic cheek swabs or blood samples to the company insurer, supposedly to allow the insurer to discover and monitor genetic abnormalities. Presumably, this would apply to a whole host of genetic predispositions to diseases such as some cancers or serious neurological diseases. Wondering why your company insurer keeps asking you to complete periodic cognition tests? Perhaps it is because — whether you like it or not — it knows that you carry a gene predisposing you to Alzheimer’s disease. Why does your company insurer require you to get mammograms more frequently than usual? Perhaps it is because it knows you carry the BRCA-1 gene predisposing you to breast cancer. Knowing one’s genetic markers may be helpful in a confidential patient-doctor setting, in which the patient consents to a genetic test. But it is conceivable that someone may not wish to know that they are likely to develop an incurable disease, like a sword of Damocles hanging over their lives.

Most importantly, Rep. Stefanik’s bill perverts the ideas of consent and of non-discrimination. One can refuse to supply one’s gene swab, but this would mean opting out of the wellness program altogether; your company’s insurer could then charge you 50 percent higher insurance premiums than your co-workers who sign away their genetic information. Effectively, one is punished for not giving up the most personal of all personal information, and the price disparity may mean that one is either strong-armed into giving up DNA against one’s will or — if one values their privacy “too much” — foregoing company insurance altogether because the non-wellness-program price is prohibitive.

And what will happen to that genetic information stored on a computer server somewhere? Will it be safe? Any of the millions of people who have had their personal information stolen in countless hacks of high-tech companies like Apple and Yahoo will tell you that an insurance company is even less likely to be able to withstand a hack and should not be trusted with your genetic code. And should the pre-existing-condition health care exemption be overturned in a future insurance marketplace, disease susceptibility information will already be on file, ready to disqualify millions of past wellness program participants from being able to purchase new insurance plans. In a more mundane scenario, stolen genetic disease-susceptibility information could be used in a blackmail scheme or smear campaign.

For numerous reasons (economic, security, ethical), H.R. 1313 is a bad idea, but for this writer, the primary objection is philosophical. Rep. Stefanik wants to turn your genetic code into a commodity, to be demanded by an insurance company at will. In a sense, she has literally sold you to an insurance company. If that is not a colossal violation of both privacy and trust, I don’t know what is.

Ben Landry lives in Canton.


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