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Human Genomic Data, Privacy and Oversight

Date & Time:
January 16, 2014 | 3:00 pm
ICT 516
Dr. Debra Mathews


Over the past ten years, the cost of sequencing a human genome has dropped from over $40 million (USD) to under $5000. This dramatic drop in cost has lead to a dramatic increase in the use of whole exome and whole genome sequencing in research and clinical care, as well as the development of a direct-to-consumer market for large-scale genetic information. Historically, the ethos of human genomics has been one of open sharing, which has been critical to progress in the field: one genome tells you nothing, meaning can only be found in the analysis of many genomes. This openness, however, holds new risks for the individuals from whom the data are derived, as it has recently become clear that even anonymized genomic data can be re-identified. Both human subjects research oversight and the structure of genomic research itself must change to take account of these new risks to privacy and confidentiality.


Debra JH Mathews, PhD, MA, is the Assistant Director for Science Programs for the Johns Hopkins Berman Institute of Bioethics [], an Assistant Professor in the Department of Pediatrics, and Affiliate Faculty in the McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins School of Medicine. Dr. Mathews earned her BS in Biology from the Pennsylvania State University and a PhD in genetics from Case Western Reserve University. Concurrent with her PhD, she earned a Master’s degree in bioethics, also from Case. She completed a Post-Doctoral Fellowship in genetics at Johns Hopkins, and the Greenwall Fellowship in Bioethics and Health Policy, at Johns Hopkins and Georgetown Universities. Until recently, Dr. Mathews served part time on the staff of the Presidential Commission for the Study of Bioethical Issues, as a Senior Policy and Research Analyst and a staff lead on the Commission’s genomics report. As the Assistant Director for Science Programs, Dr. Mathews oversees the Stem Cell Policy and Ethics program and the Program in Ethics and Brain Sciences, as well as other Institute initiatives in policy and ethics related to biomedical research and emerging technologies. Dr. Mathews's research interests focus on the intersection of emerging biomedical technologies, ethics and public policy.

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