At its blog, the Presidential Commission for the Study of Bioethical Issues covers its meeting on genomic privacy. The commission will issue a report on genomics and privacy in the fall. Here are a few excerpts from the commission’s blog posts on privacy and genetic data:
Latanya Sweeney, Ph.D., director and founder of Harvard University’s Data Privacy Lab, has made a career of weaving technology and policy together. Her presentation today provided real-world examples in the realm of consumer data privacy that helped the Commission continue its examination of genomics and privacy.
Sweeney’s exploration of how medical data is handled—mapping out how patient files were widely shared among not just health care providers but also researchers, for-profit companies, and even transcription companies—was widely publicized and one of many works that had a profound impact on U.S. policy. She has appeared in hundreds of news articles and has written numerous academic papers not only on how technology challenges privacy, but how technology can also save privacy. Her work was cited in the original publication of the HIPAA Privacy Rule and has been applauded by consumer advocacy groups; her privacy technologies have been licensed by numerous companies.
Ken Chahine, Ph.D., is the Senior Vice President of Ancestry.com and General Manager of AncestryDNA, two related companies that take great pains to maintain data confidentiality and security. The data collection processes of the two companies are designed with privacy first in mind, even down to the collection kit that strives to preserve the anonymity of their customers.
Laura Lyman Rodriguez, Ph.D., is the director of Policy, Communication and Education at the National Human Genome Research Institute at the National Institutes of Health (NIH). She oversees how the NIH collects study participant data, implements privacy safeguards and data security measures, and then transparently shares this data with researchers—in that the inquiries themselves are not hidden from the public—while protecting data and privacy.
But Chahine pointed out that DNA is anything but secure. “Why would someone hack our servers to access my data when you could follow me to a coffee shop and grab a sample from my used coffee cup?”
As researchers develop faster and less expensive methods of whole genome sequencing—the process in which a person’s DNA is decoded and analyzed—the potential to quickly diagnose current and future diseases has become tantalizingly close. But privacy concerns have emerged as the technology becomes more widespread.
For scientists to make life-saving discoveries, individuals must be willing to share their personal genomic data and trust that their data will be protected. But what exactly should those protections encompass? How should the information gathered through whole genome sequencing be collected, used, and governed?
Post: “Wrapping up Genomics and Privacy”
“The Commission’s recommendations,” said Dr. Amy Gutmann, Commission Chair and President of the University of Pennsylvania, “clump into two big categories, one is consent to whole genome sequencing and to the possible findings and how they will be treated, and the other is oversight.”
One question that was explored in depth was, as Commission member John Arras, Ph.D., of the University of Virginia, put it, “the impending merger between clinical practice and research,” and how that would impact informed consent.
Commission member Raju Kucherlapati, Ph.D., from the Harvard Medical School Department of Genetics, said, “Genetic testing for research purposes involves extensive informed consent forms signed by individuals, while the process of consent for clinical testing is not as extensive a process.”