How Private Should Genomic Data Be?

The Department of Health and Human Services is seeking public comment on ethical issues raised by easy availability of large amounts of human genome sequence data.

The Presidential Commission for the Study of Bioethical issues is examining the balancing of privacy and data access, and individual and societal interests. “As a result of the tremendous technology advances that have dramatically reduced the cost of sequencing, the science is at a point where relatively inexpensive, rapid sequencing of whole human genomes appears not only likely, but imminent,” according to the notice, available here on March 26 and being published March 27 in the Federal Register. “This prospect raises many questions for the scientific, medical, ethics, and patient communities related to how this information can and ought be collected, used and governed.”

President Obama established the commission in November 2009 and it will submit a report of findings and recommendations to him in late 2012. Issues the commission seeks comment on include:

* Privacy implications of large-scale sequencing;

* The views of individuals, research subjects, patients, families and medical professionals on privacy and evolving notions of privacy;

* Models and mechanisms for protecting privacy in genetic/genomic databases and biobanks, and other large databases of sensitive information;

* Balancing individual and societal interests with access to and sharing of genomic data;

* Who should have access to these data and who should control access;

* Use of health information technology to provide and govern access to genomic data; and

* Access to genetic/genomic information by law enforcement entities.