This nation faces a DNA dilemma: Whether to notify people carrying cancer genes

18th June 2018

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 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?”

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?

source: https://www.mcclatchydc.com/news/nation-world/article213014904.html

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