OVARIAN CANCER and US: incidental findings

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Showing posts with label incidental findings. Show all posts
Showing posts with label incidental findings. Show all posts

Wednesday, March 21, 2012

DNA donor rights affirmed : Nature News & Comment



DNA donor rights affirmed : Nature

NIH committee urges that genome study subjects be told of medically relevant results.

"It is a familiar scenario in genetic research: a subject's DNA is collected for one study, deposited in a database or biobank and then analysed by other researchers for separate studies. But what happens when a later study stumbles on something that could be of significance for the donor, such as an allele for familial hypercholesterolaemia — a treatable genetic disorder that causes progressive atherosclerosis — or some other health-related variation? Do researchers conducting secondary studies and biobanks have a duty to share such revelations with the original research subjects?

They do, when possible, according to a detailed consensus statement from a working group funded by the US National Institutes of Health (NIH) in Bethesda, Maryland, and published this week (S. M. Wolf et al. Gen. Med. http://dx.doi.org/10.1038/gim.2012.23; 2012). The statement's 26 signatories consulted dozens of other researchers and biobank managers over a two-year period. They conclude that biobanks “shoulder significant responsibility” for addressing how to deal with 'incidental findings' — those research results that could have medical consequences for the donors of genetic material.

Genetic testing is increasingly
coming up with 'incidental
findings'.

Genetics researchers are divided on the matter of incidental findings......"