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