Up-front and personal with genomics
Maxine Clarke
Thursday, 23 October 2008 11:07 UTC
The commercialization of personal genomics is moving with dizzying speed and scientists need to find innovative ways of discussing the implications with consumers, according to today’s leading Editorial in Nature (455, 1007; 23 October 2008, free to access online).
As the first conference on personal genomes opened earlier this month at Cold Spring Harbor Laboratory in New York, some present were wondering whether the event was a little premature. After all, only four people’s genomes have so far been fully sequenced and assembled, and it’s still quite difficult to interpret the genetic variation found in them (see page 1014, subscription required). But in one sense, the meeting was overdue. Increasingly, private companies are offering personal genome scans and genetic tests for sale — and consumers are buying them. Meanwhile, some scientists earlier this week made public parts of their genetic and medical data through the Personal Genome Project, spearheaded by George Church, a geneticist at Harvard University. In this context, the ethical, legal and social issues usually sidelined at such gatherings kept intruding with uncommon urgency.
The day before the meeting began, for instance, deCODE Genetics of Reykjavik, Iceland, began selling a US$1,625 risk-assessment test for breast cancer, which surveys seven of the single-point genetic variations known as single nucleotide polymorphisms (SNPs). The company says that the test will help identify women with a significantly elevated risk of the disease. But the test is worrying some oncologists and geneticists both as premature for interpretation and because the industry is poorly regulated.
Ethical concerns are paramount. Anyone can now access his or her genome information through a personal genomics scan. And if people can get that information, they will — with or without the advice of genetic counsellors, doctors or expert scientists. It is impossible to guess what issues this will raise as the science matures, although new discoveries will no doubt trigger a fresh and more complicated set of societal discussions. Scientists need to get creative about how they participate in these discussions, because they won’t have the luxury of opting out.
-
Replies