I dream of GINA

January 6, 2010 at 2:00 am Leave a comment

Sorry about the kitsch title of this post – couldn’t think of anything better. I’m pleased to see a new US Federal law – the Genetic Information Non-Discrimination Act or GINA – signed by Dubya in 2008 and taking effect December 7 2009 (Public Law 110-233, HR 493, S 358). We cannot alter our DNA but we certainly don’t want it used against us in some way. GINA limits how much employers can learn about an employee’s genetic history. So, for example, employers will be prohibited from asking employees or job candidates to take genetic tests or to provide their family medical histories. A company cannot deny a promotion to CEO for a 50-year old man based on a family history of heart disease. You cannot be discriminated against because of a hereditary predisposition for depression, schizophrenia, diabetes or bipolar disorder for example. GINA also prohibits health insurers from grilling you about medical histories or using such information to make decisions about insurance coverage or premiums. GINA does not apply to life insurance, the military, independent contractors or companies with less than 15 employees. Every employer covered by Title VII of the Civil Rights Act of 1964 must display a GINA poster prominently in the workplace (Federal posters; State posters).

The law really means that your family medical history will be protected genetic information. An insurance company will be prohibited from denying health insurance because four members of your immediate family have a history of some particular disease. I see this legislation as a major step forward for privacy rights and anti-discrimination by providing basic legal protection.

You might think that your genetic history would not be used against you. Think again. The Burlington Northern and Santa Fe Railway Company was forced to cough up US$2.2 million because it conducted genetic tests on 36 workers without their knowledge. The employees were track maintenance workers, who maintained they had job-related carpel tunnel syndrome, and the company allegedly conducted secret genetic tests to establish a predisposition to carpel tunnel syndrome and reduce its medical and workers’ compensation costs. Read some of these case studies where people were fired from their jobs due to family medical history. And remember the 1997 sci-fi thriller Gattaca, where jobs were filled by candidates with certain genetic makeup?

There’s a handy overview of what GINA does and doesn’t cover in the New England Journal of Medicine. I think there might be some gray areas though.

  • Congress carved out exceptions for the “water cooler” conversation, where a manager for example unintentionally overhears a conversation amongst employees concerning family medical history. There’s also an exception for the problem situation of an employer reading an obituary of an employee’s mother or father or if a magazine article profiles an employee living with a particular disease. But I can’t find anything in the Act that covers medical information obtained from personal web sites or social networking sites. Sometimes people create blogs or websites that chronicle their battle with ill-health – can an employer use this information against an employee? Is it public or private information?
  • imagine an employee who takes regular absences from work and, following a “water cooler” conversation, it has become well-known that the employee’s father has depression. A manager has to discipline the employee over work absences and the employee turns around and says “you’re discriminating against me because you know about my family history of depression”. How is this situation to be handled? The carve out means that it’s not illegal for the manager to know of this family history (since it was gleaned via a water cooler conversation).

I do think though GINA will lead to more genetic testing. Employees now don’t have to fear being fired from their jobs because of some genetic marker. This is surely a beneficial side effect of GINA. But perhaps there are occasions when you’d want someone to be genetically tested: think of an airline pilot with a family history of chronic heart disease. You wouldn’t want him carking it whilst flying the plane.

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2010: gazing into the tea leaves Design thinking

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