Genome Study Predicts DNA of the Whole of Iceland

Large genome databases are starting to reveal critical health informationeven about people who have not contributed their DNA.

Maps show how common certain risk-causing DNA mutations are around Iceland.

The CEO of an Icelandic gene-hunting company says he is able to identify everyone from that country who has a deadly cancer risk, but has been unable to warn people of the danger because of ethics rules governing DNA research.

The company, DeCode Genetics, based in Reykjavk, says it has collected full DNA sequences on 10,000 individuals. And because people on the island are closely related, DeCode says it can now also extrapolate to accurately guess the DNA makeup of nearly all other 320,000 citizens of that country, including those who never participated in its studies.

Thats raising complex medical and ethical issues about whether DeCode, which is owned by the U.S. biotechnology company Amgen, will be able to inform members of the public if they are at risk for fatal diseases.

Kri Stefnsson, the doctor who is founder and CEO of DeCode, says he is worried about mutations in a gene called BRCA2 that convey a sharply increased risk of breast and ovarian cancers. DeCodes data can now identify about 2,000 people with the gene mutation across Icelands population, and Stefnsson saidthat the company has been in negotiations with health authorities about whether to alert them.

We could save these people from dying prematurely, but we are not, because we as a society havent agreed on that, says Stefnsson. I personally think that not saving people with these mutations is a crime. This is an enormous risk to a large number of people.

The Icelandic Ministry of Welfare said a special committee had been formed to regulate such incidental findings and would propose regulations by the end of the year.

Kri Stefnsson

The technique used by DeCode to predict peoples genes offers clues to the future of so-called precision medicine in other countries, including the U.S., where this year President Barack Obama called for researchers to assemble a giant database of one million people (see U.S to Develop DNA Study of One Million People). A large enough U.S. database could also be used to infer genes of people whether or not they had joined it, says Stefnsson, and could raise similar questions about whether and how to report health hazards to the public.

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Genome Study Predicts DNA of the Whole of Iceland