The Presidential Commission for the Study of Bioethical Issues has issued a report “Privacy and Progress in Whole Genome Sequencing,” one in a series that the commission will produce as it identifies and promotes “policies and practices to ensure that scientific research, health care delivery, and technological innovation are conducted by the U.S. in a socially and ethically responsible manner.” The commission has previously advised the president about the risks and benefits of synthetic biology and existing rules that protect human subjects in research. It has also conducted an independent investigation into the U.S. Public Health Service’s socially transmitted disease experiments in Guatemala in the 1940s.
Concluding that whole genome sequencing holds “enormous promise” for advancing clinical care and the greater public good, the commission cautions that individual privacy interests must be protected. To that end, the commission proposes proactive measures that government can take to “help craft policies that are flexible enough to ensure progress and responsive enough to protect privacy.” Among other matters, the commission urges federal and state governments “to develop a process for ensuring a consistent floor of protections covering whole genome sequence data regardless of how they were obtained. These policies should protect individual privacy by prohibiting unauthorized whole genome sequencing without the consent of the individual from whom the sample came.” Specific protections would include informed consent as well as guarantees of confidentiality, anonymity or data security. See Presidential Commission for the Study of Bioethical Issues News Release, October 11, 2012.