October 2nd, 2007
Today's Debate: Are genetic tests a threat?
The start-up 23andme, whose best-known board member is Esther Dyson (right, from their web site), has an interesting goal.
They want your genome.
The company wants to build a database of genomes and offer “private, secured” access to it.
Jesse Reynolds of the Center for Genetics and Society writes that Google and Genentech are some of the investors who piled $10 million into its first financing. When Dyson was interviewed glowing about the idea of putting her own genome online, he notes, she didn’t inform the interviewer of her role.
Maybe that last is overly snarky. But the fact is most Americans fear medical databases. A survey by the Johns Hopkins Genetics & Policy Center taken early this year found the most trusted holders of this data are doctors.
In reporting the results, Steve Johnson of the San Jose Mercury-News noted there is enormous fear that insurers and employers might use genetic test results to discriminate against people.
A bill to prohibit that, called the Genetic Information Nondiscrimination Act (GINA) of 2007, passed the House but has yet to move in the Senate. In previous Congresses the bill passed the Senate but failed to move in the House.
The bill is stalled because businesses fear being sued for failing to follow the act. But the industry can’t move ahead until the act is passed.
As Johnson noted in his story, discrimination based on genetic tests is already occurring. People are being denied insurance. Employers are admitting they would reject applicants if they knew what was in their genes. But we all carry the risk of disease and death in our genes.
So should the act pass? Without rules, genetic tests are leaking out and people are being hurt. With rules, a mass market in genetic data would likely result. Would that be worse?
Dana Blankenhorn has been a business journalist since 1978, and has covered technology since 1982. He launched the Interactive Age Daily, the first daily coverage of the Internet to launch with a magazine, in September 1994. See his full profile and disclosure of his industry affiliations.
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| 10/02/07
