Skip to main content
Premium Trial:

Request an Annual Quote

A Country's Risk

Researchers from Decode Genetics have sequenced the genomes of thousands of Icelanders, but because of how closely related the population is and its rich genealogical data, this genetic information can be used to determine the genomes of people the researchers haven't sequenced.

Decode's Kari Stefansson and his colleagues reported in Nature Genetics that they've sequenced the whole genomes of 2,636 Icelanders and have begun to use that data to tie genetic variants to various phenotypes, including health-related ones, as GenomeWeb has reported.

In total, Decode, which is owned by Amgen, has whole genome data about 10,000 Icelanders and partial genetic information for 150,000 additional people, the New York Times says.

"Basically, what we have is a fairly detailed insight into the sequence of a genome of an entire nation," Stefansson said during a press briefing.

Decode says that it can determine, for instance, who in Iceland harbors mutations in the BCRA2 gene.

And this is bringing up some ethical conundrums, notes Technology Review's Antonio Regalado, as the company is now aware of people's risk for disease, but cannot tell them as study participants were promised anonymity and told that they would not receive results back from the study.

"The rule is that you can only use and expose genetic data if you have the permission from the individual in question," Gísli Pálsson, an anthropologist at the University of Iceland, tells Regalado. "But this is beyond informed consent. People are not even in the studies, they haven't submitted any consent or even a sample, yet the company claims to have knowledge about these people and that there is a health risk."

Such discoveries of incidental findings or findings that may affect the family members of a person who underwent testing have been an issue in genetic testing and genomic research before, but Regalado notes that this now brings it to the level of an entire country.

And as other countries build up genomic databases, they too will be facing similar questions, he says.

"Do you have the right to fiddle with people's lives on a massive scale? You can tell your neighbor, 'You are smoking too much.' But it's another thing to approach 1,000 people and say, 'You have the BRCA2 mutation,'" Pálsson adds.