realize the promise of whole genome sequencing, scientists and clinicians must
have access to data from large numbers of people who are willing to share their
private information, say authors of a report issued yesterday by the
Presidential Commission for the Study of Bioethical Issues. "This in turn
requires public trust that any whole genome sequence data shared by individuals
with clinicians and researchers will be adequately protected," they write.
The commission's investigation
found that current governance and oversight of genetic and genomic data varies
in its protection of individuals from the risks associated with sharing their
whole genome sequence data and information. In particular, a great degree of
variation exists in what protections states afford to their citizens regarding
the collection and use of genetic data.
improve current practices and help ensure privacy and security as the field of genomics advances,
the commission offers 12 recommendations, including proposals that clinicians and researchers use
robust and understandable informed consent procedures and engage in productive
exchanges of those collections of genomic information that are based on such
consent procedures. The commission recommends that the federal government
facilitate broad public access to the important clinical advances that result
from whole genome sequencing. The commission also urges federal and state
governments to ensure a consistent floor of individual privacy protections
covering whole genome sequence data across state lines, regardless of how the
data were obtained.