Policy, legal and ethical issues in genetic research
NIH to hold webinar on the draft Genomic Data Sharing (GDS) policy
On November 6, 2013
, from 11 a.m. to 1 p.m. Eastern, the National Institutes of Health (NIH) will host a webinar to provide an overview of the draft Genomic Data Sharing Policy and answer questions from the community. The meeting is free and open to the public. To register and submit questions go to: Public draft GDS webinar
For more information on the draft policy and submit comments, go to: Draft Genomic Data Sharing Policy
Whether or not human genes should be patent-eligible
Gene Patents: Supreme Court rules against
has been a topic for debate since the 1980s and of keen interest to NHGRI. On June 13th, 2013, a long-running legal case over a patent held by Myriad Genetics on a gene linked to breast cancer reached conclusion with a Supreme Court ruling that isolated but otherwise unmodified DNA can not be the subject of a patent. (more)
Presidential Bioethics Report on Incidental Findings
The Presidential Commission
for the Study of Bioethical Issues released a report on Dec. 12, 2013, entitled Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts
. Although not specifically focused on genomics, the report and its guidelines have implications for genomics research and medicine.
Read the report
Read the press release
NIH protects HeLa genome with controlled access
Balancing the twin values
of protecting patient privacy with the need for researchers to access genomic data, NIH reached an historic agreement with the family of Henrietta Lacks, whose immortalized cells (called HeLa) have been growing in laboratories worldwide since the 1950s. HeLa genome data will now be available to scientists only after they apply for permission, explain how the data will be used and fulfill other requirements.
Read here: The NIH Nature commentary, NIH press release and related publications
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Last Updated: December 12, 2013