Policy, legal and ethical issues in genetic research
Researchers explore genomic data privacy and risk
Genomic researchers routinely analyze
anonymous DNA samples to learn more about disease and health. But what if someone could identify you from your DNA? Would you still volunteer for genomic research? Dr. George Church and Dr. Isaac Kohane discussed the issue on March 21. (more)
Reimbursement Models to Promote Evidence Generation and Innovation for Genomic Tests
On October 24, 2012
, the National Human Genome Research Institute (NHGRI) and the Center for Medical Technology Policy (CMTP) convened a workshop to explore innovative ways in which genomics-based tests could be covered by public and private payers while generating evidence of the test's impact on medical outcomes, and to develop an action plan enabling future reimbursement of such tests and large-scale sequencing. A summary of that workshop is available now. (Read the summary
NHGRI/NIGMS reaffirm robust privacy protections in data sharing
The National Human Genome Research Institute
and the National Institute of General Medical Sciences, part of the National Institutes of Health, wrote a policy forum in this week's Science to accompany a research paper on the identifiability of genomic research data. The policy paper reaffirms the Institutes' commitment to the privacy of research participants and the benefits of widespread and open research data sharing. The research paper is from the Whitehead Institute for Biomedical Research in Cambridge, Mass.
Read the policy paper
Read the Whitehead Study
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Last Updated: February 18, 2013