Showing posts with label biobanks. Show all posts
Showing posts with label biobanks. Show all posts
Sunday, April 22, 2012
DNA donor rights affirmed : Nature News & Comment
DNA donor rights affirmed : Nature News & Comment
"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....."
"..... But, increasingly, geneticists are embracing the idea that research participants have a right to know of any unwelcome surprises in their genome...."
"The need to establish policies for the return of results has grown with the proliferation of whole-genome sequencing, says James Evans, editor-in-chief of Genetics in Medicine, which is publishing an entire issue on the return of results in genetic research, along with the consensus statement."
add your opinions
biobanks
,
communication
,
dna testing
,
donor's rights
,
genetic test results
,
right to know
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.
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.
add your opinions
biobanks
,
communication
,
dna
,
donors
,
genetics
,
incidental findings
,
NIH
,
research findings
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