Private Genomes, Public Concerns

CEO of deCODE Genetics Kári Stefánsson claims he could identify everyone in Iceland at high risk of getting cancer, but this has sparked a discussion about health care and the right to privacy.

In a recent interview with GenomeWeb, Kári said that it would be trivially easy to identify everyone in Iceland who bears genetic markers that indicate being very likely to get cancer. He would like to be able to work with health care specialists in order to reach out to these people and alert them of possible impending danger.

The matter, however, is not as simple as that. Þórður Sveinsson, Head of the Legal Department at the Data Protection Authority (DPA), said that even in the event of people having consented to have their genes analyzed by deCODE, this was not the same as consenting to being alerted about possible health risks found in their genes.

Kári, for his part, does not put a lot of stock in these concerns.

“Some ethicists might argue that people have the right not to know and that you shouldn’t approach people because they might lose sleep over it,” he said. “I think they should be given the opportunity to lose sleep over it. If someone gets lost in the highlands of Iceland, we dispatch hundreds of people to look for them. We don’t say that because they haven’t signed informed consent, we are not allowed to look for them. The tradition in our culture is to try to help people if there is a threat to their lives.”

Legislation about privacy and the use of genetic information has not been satisfactorily clarified. As it is, implementation of these cancer risk alerts will have to wait until the law is changed.