The Presidential Commission for the Study of Bioethical Issues is requesting public comment on the ethical issues raised by the ready availability of large-scale human genome sequence data, with regard to privacy and data access and the balancing of individual and societal interests.
Filed March 26 in the Federal Register, the Commision's notice stated that it's looking for comments relating to the policies, practices and perspectives on issues of privacy and data access as they relate to the integration of large-scale human genome sequencing into research and clinical care, including patient access.
“The Commission is interested in receiving comments on the implications of large-scale human genome sequencing for the privacy of individuals, research subjects, patients and their families; the views of those groups and medical professional communities about privacy, both as regards genomic information and evolving notions of privacy, as evidenced and influenced by social media; and models and mechanisms for protecting privacy, in both genetic/genomic databases and biobanks, but also in large databases of sensitive information,” the filing read.
“The Commission is further interested in receiving comments on issues related to balancing individual and societal interests with regard to the sharing of and access to large-scale human genomic data; the views of patients and other stakeholders on who should have access to these data and who should control access; models and mechanisms for governing access to genomic information; the role of health IT in providing and governing access to genomic data; and access to genetic/genomic information by law enforcement entities.”
The Commission will provide President Barack Obama with a report of its findings and recommendations later this year. Comments must be received by May 25.