Stanford to lead development of coordinating hub for biomedical ethics

Mildred Cho

The Stanford Center for Biomedical Ethics has been chosen by the National Human Genome Research Institute to help lead the development of a coordinating hub for information on the ethical, legal and social implications of genetic research.

The new Center for ELSI Resources and Analysis is being funded with a $7.1 million award. ELSI is an acronym for the “ethical, legal and social implications” of genomics.

The effort will be led by MILDRED CHO, associate director of the Stanford Center for Biomedical Ethics, and Sandra Lee of the Division of Ethics at Columbia University’s Department of Medical Humanities and Ethics. The Hastings Center, a bioethics research organization, and Harvard University, which houses the Personal Genetics Education Project, will collaborate on the new center.

Cho said the mission of the new center is to build a community around conducting, sharing and using ELSI research, and to make that collection of material accessible and understandable to experts and the public.

Almost 30 years after the launch of the International Human Genome Project, which aimed to map the human genome, many ethical and legal concerns still surround genetic research, Cho noted. Yet there’s no central repository where people grappling with such issues can easily find ethical or policy guidance or published research, or connect with experts who can help guide them.

“I think it should be easier for people who are writing legislation that has to do with consumer genetic testing, or the release of data from Ancestry.com, to be able to find experts who are knowledgeable about the implications of data collection by genomic companies,” said Cho, professor of pediatrics and of medicine.

Read more on the Stanford Medicine news site.