Lunch @UCSF with Barbara Koenig – Privacy and ethics in the genomic age

Lunch @UCSF with Barbara Koenig – Privacy and ethics in the genomic age

Biomedical research has entered a new age in which privacy as it has generally been understood may no longer be possible to maintain. Genome sequencing will soon be ubiquitous, revealing people’s individual genetic signatures, as well as their vulnerability to disease – whether they want to know these things or not. And for precision medicine to advance, this data will have to be shared. Researchers will need to navigate the ethical issues raised by these challenges. Barbara Koenig, one of the nation’s leading biomedical ethicists, believes that one way out of these conflicts is to directly engage the public in thinking through ethical issues.

Koenig served on the advisory committee to the director of the Centers for Disease Control and Prevention, where scientists were seeking access to public health data to combat urgent threats like influenza. And she is working with the California Department of Public Health on the implications of new genomic technologies for newborn screening, an increasingly valuable resource for researchers, since blood spots are perhaps the largest, most comprehensive repository of genetic data.

In recent years, privacy advocates have won court orders to force public health departments in Texas and Minnesota to destroy blood spots stored without parental consent. Though such issues are paramount in the developed world, it’s likely that decisions made in developed countries will inform policy around the world for years to come.

Background reading: DNA scan for infants raise questions of privacy and discrimination

#biomedicalethics

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