DNA Identifiability: Ethical Issues and Policy Challenges

Saturday, February 20, 2010: 10:30 AM-12:00 PM
Room 7B (San Diego Convention Center)
Only a few “bits” of DNA are needed to identify an individual, making the concept of anonymity in the genetic context untenable. Current regulatory frameworks that fail to recognize the identifiability of DNA affect not only the interests of individual patients and study participants, but also the broader medical and public health research enterprise, which is built on public trust. The success of research such as large-scale biorepository-based epidemiologic and long-term cohort studies, and the integration of electronic medical records and DNA data into clinical care and public health, depends on resolving issues of identifiability in order to preserve this trust. Based on recommendations from a multidisciplinary bioethics work group, the panel will discuss the global expansion of genomic research, current frameworks for the protection of DNA data, and the ethical and social issues that arise from large-scale collection, use, and distribution of DNA data. Can DNA data be anonymous? What values and interests do individuals have in their DNA? How do researchers and policy-makers affirm the interests of participants while promoting scientific progress? How do we reconcile different values, ethical norms, and scientific standards among different communities and countries? The symposium will present work group recommendations for enhancing the protection of participants in genomic research while preserving the integrity and usability of scientific data.
Joel T. Wu, Mayo Clinic
Barbara Koenig, Mayo Clinic
Joel T. Wu, Mayo Clinic
Ellen Wright Clayton, Vanderbilt University
and Barbara Koenig, Mayo Clinic
Bradley Malin, Vanderbilt University
How Easy Is It To Re-Identify DNA?
Amy McGuire, Baylor College of Medicine
How Concerned Are Research Participants?
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