Last month, the National Institutes of Health (NIH) published a draft version of its new genomic data sharing policy, along with a request for public comment. The draft policy parallels some of the concepts and recommendations discussed in the Presidential Commission for the Study of Bioethical Issues’ (Bioethics Commission) 2012 report: Privacy and Progress in Whole Genome Sequencing. The Bioethics Commission is pleased to note that several of its recommendations and core ethical principles are shared by NIH and other law and policymakers.
The Bioethics Commission’s recommends in Privacy and Progress (Recommendation 1.1) that “Funders of whole genome sequencing research… should maintain or establish clear policies defining acceptable access to and permissible uses of whole genome sequence data.” The NIH draft policy does just that: it defines the requirements for access to and use of genomic data, and sets forth the guiding ethical principles for the responsible use of such data.
The NIH draft policy states its purpose as encouraging broad sharing of genomic data, in order to facilitate important advancements in medicine, while also ensuring...
By Harold Brubaker, The Philadelphia Inquirer | 04.04.2024
Aggregated News
Acompany started by University of Pennsylvania scientist Jim Wilson has received FDA approval to test a form of gene editing in infants for the first time in the United States, the company said Thursday.
A Mexican standoff with the United States turned into a Mexican smack-down this month with the release of Mexico’s formal rebuttal to US efforts to overturn limits Mexico has ordered on the use of genetically modified (GM) corn and the...
The U.S. government must move “quickly and decisively” to avert substantial national security risks stemming from artificial intelligence (AI) which could, in the worst case, cause an “extinction-level threat to the human species,” says a report commissioned by the U.S...
The Center for Genetics and Society is fiscally sponsored by Tides Center, a 501(c)(3) non-profit organization.
Please visit www.tides.org/state-nonprofit-disclosures for additional information.