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How Private Is Your Genetic Code? Less So Than You May Think
By Elizabeth Nolan Brown, October 11, 2012 08:34 AM
Anyone who's watched more than a few episodes of Law & Order knows how easy it is to unwittingly get a sample of someone's DNA - a discarded coffee cup, a used Kleenex, a few stray hairs and you're good to go. In Dick Wolf's world, such samples are used to catch the bad guys (or exonerate the good guys), but in real life, genetic code can reveal a variety of information, including what diseases may lurk in someone's future.
This type of genetic testing - known as whole genome sequencing - has many useful applications. But medical ethicists worry over how, when and with whom such info may be shared. A report released today by the presidential bioethics commission reveals that many legal issues surrounding genetic privacy have yet to be addressed.
It is not a fantasy to think about how, in the future, without clear baseline privacy protections people could use this in ways that are really detrimental," Commission Chair Amy Gutmann told the Associated Press.
"The life-saving potential of genome sequencing depends on gathering genetic information from many thousands (perhaps millions) of individuals, most of whom will not directly benefit from the research," said Guttmann in a press release. "Those who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality, for example, about any discovered genetic variations that link to increased likelihood of certain diseases, such as Alzheimer's, diabetes, heart disease and schizophrenia."
At present, only about half of states make "surreptitious commercial testing" illegal. This means that, theoretically, anyone with access to your hair, saliva or snot could have your DNA analyzed, for whatever purpose. Right now, the process costs too much for such abuse to be likely; but with the price of gene-mapping dropping rapidly, it could soon cost less than the cost of many standard diagnostic tests.
Other protections are similarly spotty. For instance, a 2008 federal law prohibits employers or health insurance companies from discriminating on the basis of genetic information - but says nothing about life insurance of long-term care insurance providers.
The commission offered recommendations for "what ethically ought to be done and what legally must be done," including:
- Improved data security and access to databases - Integrating whole genome sequence data into health records - Federal and state laws that ensure "a consistent floor of protections" covering genetic data "regardless of how they were obtained" - Policies that prohibit unauthorized whole genome sequencing without an individual's consent
Thursday Quick Hits:
- Who are you calling a tech novice? Forbes columnist Larry Magid complains that it's "stupid and insulting" to treat boomers as universally tech-challenged. "I'm a baby boomer - and so is Bill Gates, Steve Wozniak and the late Steve Jobs," writes Magid. "It was my generation that invented personal computers. Many of us used CP/M, DOS or even Unix long before Macs and PCs had graphical user interfaces."
- RIP, Alex Karras. The former Detroit Lions lineman and TV and film actor died Wednesday at age 77. Karras had kidney disease, heart disease and stomach cancer, according to his family. His most well-known ailment, however, was dementia, which Karras attributed to old football injuries; he was one of the more than 3,500 former NFL players suing the league.
- Aging without children. In a beautiful New York Times essay, Kelly Flynn explains how her inability to have children has both shaped her approach to life and "taken on a different meaning" with age. "Now, as I help my parents navigate the trials and indignities of old age, I can't help thinking, who will do this for me?" she writes. "Is it too late to cultivate a relationship, so that in my old age, there will be someone to sneak me a beer in the nursing home or care whether my socks match?"
Photo: Hank Morgan/Rainbow/Science Faction/Corbis