An American Issue?
Philippa Brice, PHG’s communications director, told GEN sharing genetic data may be less an issue in the U.K. than in the U.S.—likely a consequence of U.K. healthcare being overseen by the state-run National Health Service. It remains to be seen, she added, whether that view will change once results emerge from the Wellcome Trust Sanger Institute’s public online survey of public concerns about genomic data. The survey is part of a larger five-year Genome Ethics study being conducted through 2015.
In the U.S., by contrast, the presidential commission spent much of its time weighing privacy concerns—understandable in a nation whose Constitution’s Fourth Amendment declares “the right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated.”
Where the commission, Dr. Erlich, and others can be most helpful is in upending the roadblock to effective privacy protection resulting from piecemeal existing laws. GINA only covers employment bias. A patient’s genome sequenced in a doctor’s office is covered by the Health Insurance Portability and Accountability Act. Sequenced in a research lab, however, that genome is subject to the “Common Rule” or Federal Policy for the Protection of Human Subjects.
Those laws, plus differences in state laws, create a crazy-quilt of rules that serves as another roadblock, leaving researchers and others unclear on how to carry out the privacy protection everyone says they want. The commission favors a single national standard, to its credit. But since the commission is only advisory, it will be up to stakeholders to spell out what form that should take—A federal law? A multi-state agreement? Another guidance?—then hammer out the substance of protections for genetic material that balance respect for privacy with advancement of research.