April 26, 2019
Hello friend! Welcome to Scrap Facts.
I'm a reporter covering health and science with insatiable curiosity. I love everything I learn, not all of which gets its own story. Each week, I'll bring you some of my favorite facts that I picked up on the job or while out living life.
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Today in Gene Reading: The ethical and legal implications of having a universal genetic database
We wrapped up our series with a Q&A with bioethicist James Hazel from Vanderbilt University Medical School to talk about the privacy aspect of direct-to-consumer genetic tests. Although private companies like 23andMe store your genetic information securely, that doesn’t mean they’re completely inaccessible. Law enforcement merely has to issue a subpoena to have access to it, if they want. Hazel and his team published a provocative opinion piece earlier this year suggesting that perhaps, more of our privacy would be protected if we had a universal genetic database. Read up on our conversation here.
In addition to law enforcement privacy issues, there’s also the concern that our genetic information contains information about our health. In the US, a law called the Genetic Information Privacy Act, or GINA (pronounced “gene-uh” but I like to think it’s got a long “i”) prohibits employers and health insurance companies from discriminating against anyone based on their genetic material.
GINA is limited. All other types of insurance, like long-term care and life insurance, are free to discriminate against you if you’ve taken a genetic test, and they believe the results may make you an expensive customer. Sure, you could not tell an insurance company that you’ve taken a genetic test that shows you have certain health risks, but if it ever finds out that you lied, it could void your policy.
Plus, just because something is illegal doesn’t mean it doesn’t happen. There have been over 2000 GINA lawsuits filed to date.
For today’s scrap fact, I’m borrowing a nugget buried in the piece we published on Monday.
The first time a company was penalized for violating GINA was the result of a rogue pooper.
Or “devious defecator,” as the judge on the case, Amy Totenberg, referred to the criminal informally. In 2012, the Atlanta, Georgia-based grocery distributors Atlas Logistics Group Retail Services asked two employees to have their cheeks swabbed to see if their DNA matched human feces it was routinely finding in its warehouses. The tests were negative, and a year later, the men sued their employer for “pain, suffering, and mental anguish,” according to Reuters. The case went to trial, and the jury awarded the plaintiffs $2.2 million for their trouble.
Would it really be a series of mine if I didn’t find a way to work in poop? 😉
Thanks for sticking with me through this series, friend. I learned a lot, and I hope you did, too.
Next up for me is a reporting fellowship on dementia, funded by the National Press Foundation, which starts on Sunday. After that, I’m taking a brief, but much needed vacation. I’ll be back in your inbox in a couple of weeks with more stories, and as always, more scrap facts.
That’s all for now. Stay curious, friend! <3
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