Losing your say on DNA

"Biotechnology in Our Lives" contains a collectionof essays. From the book jacket
"Biotechnology in Our Lives" contains a collectionof essays. From the book jacket
Posted: June 16, 2013

In a narrow ruling June 3, the U.S. Supreme Court declared that the DNA swabbing of people arrested in connection with serious crimes is legal.

The Maryland attorney general praised DNA swabbing as the 21st-century equivalent of fingerprinting and said it would help solve crimes. No doubt. But the ruling represents yet another way our DNA is slipping beyond our control even as few standards exist for its use, storage, and destruction.

The implications are laid out in Biotechnology in Our Lives, the latest book from the Council for Responsible Genetics, a Cambridge, Mass., nonprofit focused on the ethics of gene research and biotechnology. The book collects the most influential essays from the council's online and print magazine, GeneWatch.

The beauty of this tome is how clear and concise the messages are from scholars, advocates, and scientists. No article is more than a few pages.

The council helped push the first federal genetic antidiscrimination law - the Genetic Information Nondiscrimination Act - in 2008. GINA protects individuals from genetic screening when applying for health insurance or when being hired. But it has limits and does not restrict DNA collected in criminal cases.

Many avenues exist by which the government, private firms, or even citizens can obtain your DNA, the authors say.

Take direct-to-consumer genetic testing kits: They enable clients to find out their risks for disease. Since 2007, firms such as 23andMe have advertised how sending in DNA samples can "improve your health."

But a council expert, James Evans of the University of North Carolina, question such tests because you can't act on them. "Your doctor checks your cholesterol because he can change your cholesterol," Evans writes. "He isn't doing it just so he can say, 'Oh, you're at increased risk for a heart attack. Have a good day.' "

People think DNA is infallible but mistakes can occur. Partial matches - fragments of DNA - may lead police to investigate relatives and focus on the wrong person. The mislabeling or cross-contamination of samples can also lead to false accusations.

And did you know your DNA can be captured from your chewing gum?

Heather Dewey-Hagbord, a self-described "information artist," collected abandoned DNA from pieces of gum, hair, and cigarettes. Working with a do-it-yourself biology lab in Brooklyn, she generated a range of possible faces for a New York exhibit this spring.

The cost of genomic sequencing could soon fall under $1,000. It seems only a matter of time before all newborns are swabbed at birth and our genes become part of electronic health records.

The voices behind this book are calling for national rules for how anyone – from federal officials to average citizens – can obtain, use, and store DNA information.

It's hard to argue with the need. Your DNA slips out of your hands every day.


Evi Heilbrunn can be reached at eviheilbrunn@gmail.com

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