Posts in category: Whole Genome Sequencing
New HIPAA Guidance on De-Identification
On November 26, 2012, the Office for Civil Rights (OCR) within the Department of Health and Human Services released new Guidance on De-identification of Protected Health Information. The new Guidance provides covered entities—defined as certain health care providers, health care clearinghouses, or health plans—with specific tools and techniques for de-identifying health information using the two [...]
Considering Opt In vs. Opt Out Consent Procedures in WGS Research
When it comes to whole genome sequencing research, consent procedures can be complex, especially for the patient. Some patients could be unaware that their whole genome sequence data might be used in future research without additional consent. To highlight the issue, consider this hypothetical example: After a painful gallbladder attack, 27-year-old Cindy allowed surgeons to [...]
Executive Director Lisa M. Lee Presents “Privacy and Progress” at Personalized Medicine Conference
Presidential Commission for the Study of Bioethical Issues Executive Director Lisa M. Lee, Ph.D., M.S., presented the Commission’s recent report, Privacy and Progress in Whole Genome Sequencing at the 8th Annual Personalized Medicine Conference at the Harvard Medical School in Boston. The conference, held November 28-29, is organized by Harvard Medical School, Harvard Business School, [...]
Commission Member Anita Allen Presents “Privacy and Progress” at Cold Spring Harbor Laboratory Meeting
Presidential Commission for the Study of Bioethical Issues Member Anita Allen, J.D., Ph.D., presented the Commission’s most recent report, Privacy and Progress in Whole Genome Sequencing, to a key audience of clinicians and scientists whose work involves the very technology the report addresses. Allen’s presentation was part of an Ethics Panel at the Cold Spring [...]
The Question of Incidental Findings in Whole Genome Sequencing
A mother of three young children enrolls in a breast cancer research study in which researchers will sequence her entire genome to look for variants that might contribute to developing breast cancer. As researchers analyze her genome, they discover that she has markers associated with hereditary non-polyposis colorectal cancer (HNPCC), a hereditary syndrome that is [...]
Empowering Patients through Informed Consent
If your doctor recommended that you have your whole genome sequenced, you would likely have a lot of questions, including: Where will my data be stored? Who will have access to them? Will they be secure? Can I control who sees the information gathered from my data? How will my information be kept private? Is [...]
Wrapping up Genomics and Privacy
The Presidential Commission for the Study of Bioethical Issues wrapped up its public deliberations on genomics and privacy this morning, ending a more than year long examination of the emergence of whole genome sequencing as an addition to clinical care and genetic research. The Commission spent several hours publicly discussing the set of recommendations it [...]
Do privacy concerns follow the coffee cup?
As the Presidential Commission for the Study of Bioethical Issues continued its review of genomics and privacy, the group heard from experts on genomic database security, one from the private sector and one from the federal government. Ken Chahine, Ph.D., is the Senior Vice President of Ancestry.com and General Manager of AncestryDNA, two related companies [...]
On the Frontiers of Technology and Privacy
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 [...]
Assessing the Life-Saving Potential and Privacy Implications of Whole Genome Sequencing
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 [...]
