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Genetic Future: Research subjects should have access to their own data
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RT @dgmacarthur: My post in @genomicslawyer's "What ELSI is New" series - should research data be returned to subjects? http://bit.ly/ruKx7 21 days ago |
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important ethics question from @dgmacarthur in "What ELSI is New" series - should research data be returned to subjects? http://bit.ly/ruKx7 21 days ago |
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It’s my genome: should researchers be obliged to return genetic data to research participants? http://bit.ly/ruKx7 (from @dgmacarthur) 21 days ago |
Research subjects should have access to their own data
Genetic Future —
My contribution to Genomics Law Report's superb "What ELSI is New" series is up now. The gist of my argument: as we move into an era of large-scale whole-genome sequencing studies and the utility of genomic information grows, researchers will increasingly frequently be faced with the discovery of highly medically relevant information within their subjects' genomes. Yet under the consent procedures established for most modern genetic research projects the anonymised subjects would never have a chance to learn about this information. As such, people will die from ...
An open letter to the medical community.
Synthesis —
... today among autistic parents, for example.
Please, in your advocacy of personalized medicine, abandon the paternalistic model. Seek to empower patients and regain the trust our profession has deserved for so long. Don’t let mistrust and arrogance leads patients away into the arms of the quacks.
Sincerely Yours,
William Gunn
Further reading:
In Iran and in the US Health Care System, Citizens’ Access to Computable Data Frees Everything!
It’s my genome: should researchers be obliged to return genetic data to research participants? ...
Required reading
genomeboy.com —
The Genomics Law Report continues to dazzle. Two recent commentaries merit special attention.
Daniel MacArthur on the right of research participants to the entirety of their data:
Returning incidental findings poses major challenges for researchers: it requires disrupting well-established protocols for informed consent and subject anonymisation, and establishing new frameworks for responsible data return and counselling. Yet the alternative approach – withholding medically useful (or even simply intellectually interesting) ...
