Online Program

Enabling privacy and progress: Protecting individual participants in big data

Tuesday, November 5, 2013 : 11:10 a.m. - 11:30 a.m.

Kayte Spector-Bagdady, JD, MBioethics, Presidential Commission for the Study of Bioethical Issues, Washington, DC
Elizabeth Pike, JD, Presidential Commission for the Study of Bioethical Issues, Washington, DC
More and more, the public health community is relying on large-scale collections of data to advance research and foster achievements in the field. Large-scale databases, however, consist of individual contributions. It is critical that researchers not lose sight of the fact that the ethical considerations applicable to ″big data″ include not only public beneficence and advancement of science, but also respect for persons and concerns about individual privacy. This presentation will use the storage and sharing of genomic data in bio-repositories as a case study to discuss how to reconcile public and individual interests in big data sets. Recent developments in genomics have called into question the appropriateness of the ″identifiability″ paradigm, and whether people should have to consent to future research of ″deidentified″ genomic data. The Presidential Commission for the Study of Bioethical Issues recently argued in its report ″Privacy and Progress in Whole Genome Sequencing″ that the public health community needs to focus on issues of access to and use of data, rather than on identifiability. We will argue that policies and procedures should begin to move away from debating the identifiability of data and start treating like data alike¬óregardless of where or by whom it was collected. We will discuss the facets of privacy protections that must be in place to encourage public confidence in providing data to large databases so that critical public health science can continue to advance.

Learning Areas:

Ethics, professional and legal requirements
Public health or related public policy
Public health or related research

Learning Objectives:
Identify the ethical principles applicable to large data sets. Assess the appropriateness of using "identifiability" as a marker for personal data. Demonstrate how to reconcile public and individual interests in large data sets.

Keyword(s): Ethics, Genetics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a current Associate Director for the Bioethics Commission and have been on staff for over two years. I have worked on all four of the Commissions' reports to date and acted as a staff lead on "Ethically Impossible": STD Research in Guatemala from 1946 to 1948. I was the Associate Director for "Privacy and Progress in Whole Genome Sequencing," the report we are proposing to present at this conference.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.