![]() ![]() You can use this in preventive medicine like never before.”ĭeCode’s data might also be able to predict who in the population is at elevated relative risk for Alzheimer’s disease or who has an undiagnosed learning disability.ĭeCode was started in 1996 with the idea of linking DNA research to Iceland’s national health system (see “ Population Inc.”). “It is one tiny little example of what you can do. “We could in Iceland, at the push of a button, find all women with a mutation in the BRCA2 gene,” says Stefánsson. Stefansson says many of those deaths could be avoided by preventive surgery, like a mastectomy. Men are also affected because the mutation raises the chance of prostate cancer. 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. He believes such 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. Pálsson says traditional notions of medical ethics are now in open conflict with the aims and capabilities of precision medicine. 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.” “The rule is that you can only use and expose genetic data if you have the permission from the individual in question,” says Gísli Pálsson, an anthropologist at the University of Iceland. Bioethicists recognize that people have a right “not to know” of genetic hazards, which means they can’t simply be told. Volunteers who signed up for DeCode’s studies were promised anonymity, and also that they wouldn’t learn of research findings. Various legal and ethical obstacles currently prevent DeCode from warning people who are at risk. ![]() He said the tiny island’s detailed genealogical records are why “it was achieved first in Iceland.” “This technique can be applied to any population,” says Myles Axton, chief editor of Nature Genetics, the journal in which DeCode today presented some of its findings. database could also be used to infer genes of people whether or not they had joined it, says Stefánsson, and could raise similar questions about whether and how to report health hazards to the public. The technique used by DeCode to predict people’s genes offers clues to the future of so-called precision medicine in other countries, including the U.S., where this year President Barack Obama called for researchers to assemble a giant database of one million people (see “ U.S to Develop DNA Study of One Million People”). ![]()
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