Iceland can ID cancer-prone people, but obstacles cloud effort

REYKJAVIK, Iceland — Sometime in the future, U.S. researchers will be able to press a button and reliably identify the thousands of people who carry cancer-causing genes, including those that trigger breast cancer.

In Iceland, that day is already here. With a relatively uniform population and extensive DNA databases, Iceland could easily pinpoint which of its people are predisposed to certain diseases and notify them immediately. So far, the government has refused to do so. Why? Iceland confronts legal and ethical obstacles that have divided the nation and foreshadow what larger countries may soon face.

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 bull …,” Dr. Kari Stefansson, a world-renowned Icelandic neurologist and biotech leader who has been at the center of the nation’s DNA debate, said. “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?”

In Iceland more than anywhere, the promises of technology and “personalized medicine” are clashing with concerns over privacy and medical norms. In the United States and elsewhere, scientists and doctors will soon have the capability to tell people about their predispositions to diseases. But at what age should they be told, and with what caveats? Should researchers only tell individuals about diseases that can be prevented — such as with a mastectomy — as opposed to those they can’t stop, such as Alzheimer’s? And what if people don’t want to know?

Stefansson, who served on the faculty of University of Chicago and Harvard University before starting deCODE, said he expects the United States to face similar conundrums as DNA testing evolves. Currently, the National Institutes of Health is seeking to recruit 1 million Americans to contribute DNA and medical data — in an anonymous form — to the “All of Us” national research project.

Stephanie Devaney, a geneticist and deputy director of All of Us, said the NIH is taking several steps to avoid the kind of dilemma Iceland is facing. Roughly 72,000 people have so far signed consent forms to participate in All of Us, with the expectation they will receive personal information from the study, if they want it, she said.

The NIH is preparing to select a genetic counseling service to help participants understand their results and will likely ask them to sign separate consent forms before receiving personal health data and interpretations. “We’ve been thinking about this from the embryonic stages of this program,” said Devaney.

Stefansson said he understands concerns about bio-ethics, but argues that Iceland is overreacting. He blames the dilemma partly on German dominance of Europe’s research protocols, which he thinks are excessively sensitive.

“The Germans, for whom I have great admiration, are still dealing with their bad conscience from the Second World War,” he said. “They have an extraordinarily ambivalent view of any instruments that allow you to approach a lot of people for any particular purpose.”