Tags: iceland | genetic | results | dna | subjects | not contacted

Iceland Prevents Researcher From Notifying Those With Cancer Genes

Iceland Prevents Researcher From Notifying Those With Cancer Genes
Men cross a shopping street on in Reykjavik, Iceland. (Spencer Platt/Getty Images)

By    |   Saturday, 16 June 2018 09:29 PM

Iceland is confronting legal and ethical obstacles as it is refusing to notify people who carry cancer-causing genes because of privacy issues, McClatchy reports.

Since the late 1990s, tens of thousands of Icelanders have contributed their DNA for research, but because those people didn’t consent to being contacted about any personal health risks that scientists might discover, Icelandic regulators determined that neither the government nor private industry could notify them of predispositions to certain diseases.

Dr. Kari Stefansson, a renowned Icelandic neurologist and biotech leader who has been at the center of the nation’s DNA debate, called the obstacle, “utter, thorough bulls — t.”

“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?”

Iceland is an island country of just 330,000 people and is desolate, remote and isolated. As much as 90 percent of its population is considered to be pure Icelandic, making it a unique gene pool for research.

Stefansson founded a company called deCODE Genetics in 1996, and collected DNA in an attempt to mine the gene pool of an entire country in search of the root causes of some of the world’s worst diseases with the hopes of finding potential cures along the way.

Stefansson now says the company can identify carriers of the BRCA2 gene, a gene that causes breast cancer, in the 60,000 Icelanders whose DNA has been fully sequenced. But Iceland is saying no because deCODE initially used “presumed consent” in creating a large database of Icelanders’ genetic information and medical records for research.

Women who want to know whether they have the BRCA2 gene can log on to a website created by deCODE.

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Iceland is confronting legal and ethical obstacles as it is refusing to notify people who carry cancer-causing genes because of privacy issues, McClatchy reports.
iceland, genetic, results, dna, subjects, not contacted
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2018-29-16
Saturday, 16 June 2018 09:29 PM
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