In 'biorights' movement, patients seek compensation for providing genetic samples
The promise of large-scale genomics hinges on individuals' willingness to share genetic samples with companies and databases for analytics purposes. Many of these projects, including the federal government's Precision Medicine Initiative, call on volunteers to offer biological specimens. But a new movement has emerged, the "biorights movement," in which donors seek compensation for biological samples, the promise that useful medical information will be returned to donors, or some control over how samples will be studied, according to a Boston Globe report.
Mary O'Connor, a 52-year-old woman who provided a saliva sample to a genomics company DNAsimple only after the company compensated her $50, told The Globe, "there has been an over-assumption and a gross expectation of patient altruism."
DNAsimple pays donors for their samples. The base price for a single donated sample is $50, but the exact amount varies.
CEO of DNAsimple Olivier Noel told Boston Globe individuals "feel part of the process when they get compensated."
Apart from payment, there are conversations regarding the use of tissue, blood and other samples like tumors that are left over from medical procedures for research. HHS and other federal entities have proposed legislation requiring researchers to obtain patient permission to study those samples, even if they don't know the donor's identity, according to the report. Researchers opposing that proposal say the restriction will hinder medical advancement.
More articles on genomics:
Researchers identify gene corrolated with increased ear infection risk in children
University of Michigan School of Public Health joins Precision Medicine Initiative
Allscripts subsidiary launches genomics initiative at NIH
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