Issues in Genetics
Policy, legal and ethical issues in genetic research
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We Speak Your Name: Brooklyn community celebrates Henrietta Lacks

Read moreThe world owes much to Henrietta Lacks, the African-American woman whose cells were removed during a biopsy in 1951 and used for research without her knowledge or approval. Mrs. Lacks died at the age of 31, a few months after her diagnosis of cervical cancer. She would never know that more than six decades later, her cells would continue to grow and provide a foundation for advancements in biomedical research. Read more


Gene Patents: Supreme Court rules against

Supreme Court buildingWhether or not human genes should be patent-eligible 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)

NHGRI/ASHG Genetics and Public Policy Fellowship
Workshop Summary

Meeting on the implications of the ACMG Recommendations

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Read the full summary of the workshop to discuss the potential implications on research policies of recommendations and guidelines regarding the management of incidental findings when patients undergo clinical exome or genome sequencing. 
Workshop Summary
PDF file

Presidential Bioethics Report on Incidental Findings

Read more 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

Last Updated: July 2, 2014