Be Your Own Boss [alert]

There is no better time to be self-employed.  Quietly the chips are getting stacked against the privacy of your own personal health and genetic information (PHI = personal health information).  The article below suggests that employer provided health plans will eventually offer (financial)  incentives if you as an employee give up your genetic info, but that could lead to higher costs to the individual if there are DNA markers for propensity to diseases that will incur high costs in the future.  It will come disguised as a “benefit”, and the pattern has already been in play.  For at least the last two times I signed up for employer offered health coverage: rewards amounting to hundreds of dollars offset my health insurance, if I were to submit my weight, blood sugar, cholesterol. The reason given, if I recall, is to help me chart a healthy journey through life, lose weight, stop smoking, etc.   This is all well and good until the health plans decide to charge me a higher rate because my BMI (body mass index) puts me as “obese”, and my health information is used against my interest.

Now genetic information.  What next -mental health evaluations?  This year for the first time my employer also offered what amounted to a personality test.  To help me improve my leadership skills, see?  I don’t know the details because I declined to complete that assessment, after confirming it was not mandatory.

The words in the link above are deliberately shocking and inflammatory, but perhaps developments such as these should have a brighter light revealing their potential impact on your privacy.

Once such scenarios such as HR 1313 make it into law, your choice of last resort could be to voluntarily terminate your employment relationship; yes I mean it’s easy, just quit.  That is one benefit of living in a free country.  Or just pay a higher health insurance premium because your genetic information reveals your DNA carry “defects” that will cost a lot of money to treat or cure.  Wouldn’t it better to just hold on to existing clear delineation in protections such as GINA (genetic information nondiscrimmination act)?

An extract from HR 1313 (near the bottom of the page) suggests that “wellness program” are exempt from GINA protections:

(b) Collection Of Information.—Notwithstanding any other provision of law, the collection of information about the manifested disease or disorder of a family member shall not be considered an unlawful acquisition of genetic information with respect to another family member as part of a workplace wellness program described in paragraph (1) or (2) offered by an employer (or in conjunction with an employer-sponsored health plan described in section 2705(j) of the Public Health Service Act (42 U.S.C. 300gg–4(j))) and shall not violate title I or title II of the Genetic Information Nondiscrimination Act of 2008 (Public Law 110–233). For purposes of the preceding sentence, the term “family member” has the meaning given such term in section 201 of the Genetic Information Nondiscrimination Act (Public Law 110–233).

Below is extracted from the original article:

New bill would let companies force workers to get genetic tests, share results

Under guise of “voluntary” wellness programs, employees’ genetics could be exposed.

Most people would likely want to keep the results of genetic tests highly guarded—if they want their genetic code deciphered at all. But, as STAT reports, a new bill that is quietly moving through the House would allow companies to strong-arm their employees into taking genetic tests and then sharing that data with unregulated third parties as well as the employer. Employees that resist could face penalties of thousands of dollars.

In the past, such personal information has been protected by a law called GINA, the Genetic Information Nondiscrimination Act, which shields people from DNA-based discrimination. But the new bill, HR 1313, gets around this by allowing genetic testing to be part of company wellness programs.

Company wellness programs, which often involve filling out health surveys and undergoing screenings, are pitched as a way to improve employee health and reduce overall health costs. But, research has shown that they have little effect on employee health and may actually end up costing companies. Still, they may survive as a way to push healthcare costs onto employees. As Ars has reported before, companies use financial incentives to get employees to participate in these wellness programs. Under the ACA, these incentives can include all sorts of rewards and compensations. For instance, people who don’t want to participate can pay up to 60 percent more on employer-sponsored insurance premiums. That can easily amount to thousands of dollars each year.Despite the heavy financial pressure, employee participation is still considered voluntary. Under HR 1313, GINA wouldn’t apply to anything voluntarily collected through wellness programs, and companies would have access to genetic data. That information would be stripped of identifiers, but in small companies, it could be fairly easy to match certain genetic profiles to specific employees.

Moreover, employers tend to hire third parties to collect and manage health data. These companies are not heavily regulated and can review genetic and other health data with identifiers. Some of the companies even sell health information to advertisers, STAT notes.

Civil rights and genetic privacy advocates strongly opposed the bill. In a press release, Nancy Cox, PhD, president of the American Society of Human Genetics said:

“We urge the Committee not to move forward with consideration of this bill. As longtime advocates of genetic privacy, we instead encourage the Committee to pursue ways to foster workplace wellness and employee health without infringing upon the civil rights afforded by [Americans with Disabilities Act] and GINA.”

On Wednesday, the House Education and the Workforce Committee approved HR 1313 along party lines, with 22 Republicans supporting and 17 Democrats opposing the bill.

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