Since the late 1990s, tens of thousands of Icelanders have agreed to contribute their DNA to a public-private science projects aimed at delivering medical breakthroughs. But in contributing their DNA — and in many cases, their medical records — these people never explicitly consented to be notified of personal health risks that scientists might discover.
Icelandic regulators have determined that without that explicit consent, neither the government nor private industry can notify people of these risks.
“That is utter, thorough bulls–t,” Dr. Kári Stefánsson, a world-renowned Icelandic neurologist and biotech leader who has been at the center of the nation’s DNA debate, told McClatchy in an interview in his Reykjavík office. “There is a tradition in American society, there is a tradition in Icelandic society, to save people who are in life-threatening situations, without asking them for informed consent. Should there be a different rule if the danger is because of a mutated gene?”