Tag Archives: genomics

Decoding ENCODE

Today, a scientific collaboration called the Encyclopedia of DNA Elements (ENCODE) published some of its data. When I say “collaboration,” I mean more than 400 scientists working in 32 different labs, and when I say “some of its data,” I … Continue reading

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Genetic Privacy: An Inalienable Right?

Congresswoman Louise Slaughter (D-NY) has a thought-provoking editorial in the 11 May issue of Science:

The Genetic Information Nondiscrimination Act (GINA) languished in past Congresses for 12 years. But finally, new leadership in the House of Representatives has given the bill its best chance to become law since its introduction in 1995. On 25 April, GINA passed the House by a vote of 420 to 3. The act will prohibit health insurers from denying coverage or charging higher premiums to a healthy individual solely because they possess a genetic predisposition to develop a disease in the future. It will also bar employers from using genetic information in hiring, firing, job placement, or promotion decisions.

She goes on to argue that genetic discrimination is a real and insidious danger, and that the new legislation is critical to stopping it. While I do believe that people are already facing uninformed discrimination on the basis of primitive, misinterpreted genetic tests, I’m not convinced that we should have an inalienable right to keep our genetic information secret from insurers and employers. Currently, insurers can ask if I have a family history of, say, cancer or diabetes. That’s genetic information. So if a test comes along that makes solid predictions from my actual DNA sequence, rather than a potentially flawed inference from vague family history data, why am I suddenly allowed to keep that a secret? Continue reading

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More Money for Cheap Genomes

The National Human Genome Research Institute, one of the National Institutes of Health, today announced two efforts to accelerate the development of cheaper whole-genome sequencing. One announcement, which had been anticipated, was that the NHGRI has awarded several new grants, totaling about $13 million, to researchers developing the next generation of genome sequencing technologies. The other development is a new $10 million reward offering from the X Prize Foundation, the folks who are famous for trying to bring space flight to the masses – or at least to the merely rich. Continue reading

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