Do Today’s Bioethics Laws Even Apply in the Face of Modern Genetic Research?

Ethics Rules Keep DeCode Genetics From Revealing Cancer Risks, MIT Technology Review, March 25, 2015
Kári Stefánsson, the CEO of [DeCode Genetics. . . owned by the U.S. biotechnology company Amgen,] an Icelandic gene-hunting company says he is able to identify everyone from that country who has a deadly cancer risk.” How, you ask? “[I]t has collected full DNA sequences on 10,000 individuals”, all of which are Icelandic. The trick is that “because people on the island are closely related, DeCode says it can now also extrapolate to accurately guess the DNA makeup of nearly all other 320,000 citizens of that country, including those who never participated in its studies.” Whoa. The CEO “has been unable to warn people of the danger because of ethics rules governing DNA research.” Darn ethics.

Gísli Pálsson, an anthropologist at the University of Iceland” isn’t pleased with the current state of Medical Privacy Ethics either:
“The rule is that you can only use and expose genetic data if you have the permission from the individual in question. . . But this is beyond informed consent. People are not even in the studies, they haven’t submitted any consent or even a sample, yet the company claims to have knowledge about these people and that there is a health risk.. . . traditional notions of medical ethics are now in open conflict with the aims and capabilities of precision medicine.. . . [S]uch standards will need to be adjusted in fundamental ways in the future, so that more weight is given to public health benefits over individual privacy rights.”

Scariest Piece of the Whole Article?
“The life expectancy of women with the BRAC2 mutation is 12 years less than for women without it because 86 percent of those who have it will develop cancer.. . . many of those deaths could be avoided by preventive surgery, like a mastectomy.. . . ‘We could in Iceland, at the push of a button, find all women with a mutation in the BRCA2 gene’”.

Note: I originally wrote this summary & commentary for The SDK: The Privacy Edition 2015.03.30 (available here), but the summary and commentary got so long I decided it deserved its own blog post.
This article is 100% worth reading. If you have any interest,
at all, in Medical Privacy, read this. MIT Technology Review makes their articles pretty readable.

But if you don’t have the time, let me at least assure you of this: this technology isn’t going to be applicable to the United States in the near future. A significant reason for why this is possible in Iceland is because the data used in this study was collected entirely from Icelandic people, and the people in Iceland are “closely related”. In the United States, we are the furthest possible from all being closely related. So… winning… unless you were really into that whole identifying the portion of the population with a particular gene at the touch of a button. The thing is, I picture the next step being a surgical laser getting hooked to a satellite, to provide mastectomies from space… Or the government going door-to-door. And even the MIT Technology Review article admits that “Bioethicists recognize that people have a right “not to know” of genetic hazards”.

Via @TechReview @AntonioRegalado

UpdateWired (Why Iceland Is the World’s Greatest Genetic Laboratory, March 25, 2015) tackles discussion of this issue as well. Turns out, @Wired’s @KatieMPalmer was on the same page as I. She confirms my note that this technology isn’t coming to the United States, or any other heterogeneous population, anytime soon. She writes “Iceland has a remarkably homogeneous population that can trace its lineage to just a few common ancestors.” She further quotes deCODE’s CEO, explaining that “[o]n a larger scale, in an outbred European population, you’d need a much bigger reference population and many more genomes.”
Via @Wired @KatieMPalmer @decodegenetics

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