Event Four

Details

Event Title: An Ethics Enigma? Consent, Privacy, Return of Results and Whole Genome Research

Event Date and Time: Monday, January 11, 2010, 4:00-5:30

Event Location: Forum Hall, 4th floor of Palmer Commons
To view map and directions, please visit http://palmercommons.umich.edu/directions/

Event Description: Whole genome research generates a host of research ethics challenges. While many of these issues are not new or unique to whole genome research, the massive amount of personal genomic information that is generated by the work both intensifies the issues and makes their resolution a more urgent policy dilemma. In this talk, Professor Caulfield will touch on a number of the most pressing issues. For example, should researchers have to get consent from the close biological relatives of a research participant before they sequence and/or publish a whole genome? Do they need to get consent for every research project or can researchers simply obtain a broad consent for future use? And what about incidental findings? What information do researchers need to return to the research participant?

Discuss this ELSI issue in the ELSI Discussion Forum

Speakers

Timothy Caulfield

Professor Timothy Caulfield, Keynote speaker

Biography

Timothy Caulfield has been Research Director of the Health Law Institute at the University of Alberta, since 1993. In 2001 he received a Canada Research Chair in Health Law and Policy. He is also a Professor in the Faculty of Law and the School of Public Health. Over the past several years, he has been involved in a variety of interdisciplinary research endeavours that have allowed him to publish over one hundred and fifty articles and book chapters. He is a Senior Health Scholar with the Alberta Heritage Foundation for Medical Research, the Principal Investigator for Genome Canada project on the regulation of genomic technologies, the theme leader for the Stem Cell Network (National Centres of Excellence) and has several projects funded by the Canadian Institutes of Health Research. Professor Caulfield is and has been involved with a number of national policy and research ethics committees, including Canadian Biotechnology Advisory Committee, Genome Canada’s Science Advisory Committee, the Federal Panel on Research Ethics and the Royal Society of Canada’s Expert Panel on the Future of Food Biotechnology (2001). He is a member of the Royal Society of Canada and the Canadian Academy of Health Sciences. He teaches biotechnology in the Faculty of Law and is the editor for the Health Law Journal and Health Law Review.

Selected Publications

  1. Ubaka, O. & Caulfield, T. (2009). Human dignity and biotechnology policy. In P. Atkinson, P. Glasner, & M. Lock (Eds.), Handbook of Genetics and Society: Mapping the New Genomic Era (pp. 448-461). New York: Routledge.
  2. Caulfield, T., McGuire, A., Cho, M., et al. (2008). Research ethics recommendations for whole genome research: Consensus statement. PLoS Biology. 6(3), 430-435.
Sharon Kardia

Dr. Sharon Kardia

Biography

Dr. Kardia's main research interests are in the genetic epidemiology of cardiovascular disease and its risk factors. She is particularly interested in gene-environment and gene-gene interactions and in developing novel analytical strategies to understand the complex relationship between genetic variation, environmental variation, and risk of common chronic diseases. Dr. Kardia serves with Dr. Toby Citrin as the co-director of both the Life Sciences and Society Program and the Michigan Center for Genomics & Public Health. Dr. Kardia also is the director of the Public Health Genetics Program in the School of Public Health.

Selected Publications

  1. Payne P. W., Royal C., & Kardia S. L. R. (2007). Genetic and social environment interactions and their impact on health policy. J Am Acad Orthop Surg. 15(suppl1), S95-S98.
  2. Wang, C., Bowen, D. J., & Kardia, S. L. R. (2005). Research and practice opportunities at the intersection of health education, health behavior, and genomics. Health Education & Behavior. 32, 686-701.

Readings

Research Ethics Recommendations for Whole-Genome Research: Consensus Statement

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