Rethinking Healthcare

What rights should you have to your own DNA?

What rights should you have to your own DNA?

Posting in Science

California's proposed Genetic Information Privacy Act would require written consent for scientific use of your DNA. But scientists argue that it would significantly hinder research.

Things you own: Your clothes. Your car. Your body parts. Your DNA?

A new bill under consideration by the the California Senate Appropriations Committee proposes to define your genetic data as personal property, Scientific American reports.

The Genetic Information Nondiscrimination Act (GINA) passed by the U.S. Congress in 2008 already states that your genetic information can't influence your health insurance or your employment.

But as anyone who's seen Gattaca can attest, people have bigger picture concerns about others' access to their DNA.

"It's becoming easier and quicker and cheaper for people to obtain their genetic profile or genetic information," California state Senator Alex Padilla, the California bill's author, told Scientific American. "It's such sensitive and personal information that it ought to be protected."

Writer Helen Shen explains:

Under the newly proposed bill, a person's genetic information may only be accessed by individuals specifically named on a consent form, and only for purposes written on the form. Genetic information along with the original samples must be destroyed once their specified purposes are fulfilled.

Under GINA, your DNA can be used "For anonymous research where the identity of the subject will not be released," without your informed consent.

Why could this be concerning? GINA critic Tera Eerkes, founder of the now-defunct personal genetic testing company Qtrait, told Wired's Brandon Keim:

Once [your genetic information] is distributed to other groups, it’s difficult for me to see how that information can be fully protected. We all know that laptops full of important private information are frequently lost and misplaced, humans make mistakes. Your DNA is a unique fingerprint of you, so your identity can never fully be protected once your DNA is public. In addition, your DNA can potentially tell people something about your children and your close relatives.

GINA does not protect you from having your genetic information used to discriminate against you when you apply for life insurance, long term care, or disability insurance.

The California bill would require researchers to obtain the signed consent of every person whose genetic information is part of their DNA bank, for each new study they undertake. And that's worrying researchers.

The University of California estimates the measure would cost them $594,000 more a year in administrative costs, and has expressed concern that it would hinder their researchers from receiving competitive research grants.

Scientific American's Shen reports:

Geneticist David Segal, associate director of genomics at the University of California, Davis [...] points out that scientists typically sequence DNA from thousands of people to discover genes associated with particular diseases. Under the proposed legislation, a large genomic dataset could not be re-used to study a different disease. Researchers would either need to destroy the data after each study, or track down thousands of former subjects for new authorizations—an infeasible task, he says.

State legislatures in South Dakota, Alabama, Massachusetts, and Vermont have also proposed bills defining genetic data as personal over the last year. The California Senate Appropriations Committee must decide by 25 May whether the costs of their bill overwhelms its ethical worth. Then the bill would come under a vote in the state senate, after which it must pass through the Assembly. If ultimately signed into law by governor Jerry Brown, it will be the first of its kind enacted in the U.S.

Photo: Col Ford and Natasha de Vere/Flickr

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Audrey Quinn

Contributing Writer

Audrey Quinn is a Brooklyn-based multimedia journalist focused on health, tech and the economy. Her radio stories can be heard on Marketplace, Studio 360, PRI's The World, NPR's Latino USA, Deutsche Welle Radio and The Believer Magazine podcast. In addition to her work with CBS Interactive she produces multimedia science stories for online publications and is a teaching assistant at the Transom Story Workshop. Her investigative work has been awarded by the Fund for Investigative Journalism and The Nation Institute’s Investigative Fund. Follow her on Twitter. Disclosure