Since the Human Genome Project was completed in 2000, there has been debate in biomedical literature about the use of race and ethnicity in genetic research potentially resulting in racial/ethnic stereotyping. Drs. Daar and Ali-Khan examined the 2005 Admixture Mapping study, which looked for risk factors for Multiple Sclerosis (MS) in African Americans and European Americans, a disease that is extremely rare in Sub-Sahara Africans, common in populations of European desent, and of intermediate frequency in African Americans.
Drs. Daar and Ali-Khan examined the ethical and social issues raised by the Admixture Mapping project and used these to draw up a series of recommendations and points for policy makers and researchers to consider when undertaking population-based genomics studies.
"We are extremely pleased to be awarded this prize by OGI and have our work recognized," commented Dr. Abdallah S. Daar, Senior Scientist and Director of Ethics and Commercialization, McLaughlin-Rotman Centre for Global Health, and Professor of Public Health Sciences at the Dalla Lana School of Public Health, University of Toronto. "Working to encourage public understanding of genetic diversity, which goes beyond simplistic racial or ethnic stereotypes, is crucial to extract the maximum benefit from newly emerging genetic knowledge. We very much hope that our paper may function as a key reference document for those working in this field."
The paper, titled Admixture mapping: from paradigms of race and ethnicity to population history, published in August 2010 in the HUGO Journal, examined the social and ethical issues, the benefits and the risks of Admixture Mapping, and more generally, of population-based genomic methods. Over the course of the study, Drs. Daar and Ali-Khan conducted interviews with researchers at the forefront of genomics and bioethics, including representatives from the International Multiple Sclerosis Genetics Consortium, the Harvard Center for Neurodegeneration and Repair, and the Broad Institute of MIT and Harvard, and members of the African American MS community.
"The findings examine issues that are also directly relevant to the development, testing and marketing of drugs aimed at specific population segments," commented Dr. Sarah Ali-Khan, who was a Post-Doctoral Fellow in genomics and bioethics at MRC at the time of the study. "Our work provides practical guidelines to mitigate and negotiate potential pitfalls around fears of discrimination in genetic studies, and therefore may facilitate better population-based studies and assist in moving beyond racial and ethnic stereotyping."
Dr. Mark Poznansky, President and CEO, OGI, said: "It is fitting that the potential of population-based studies be recognized. Such studies hold the promise to yield important biomedical knowledge, which may otherwise be hindered by fears of discrimination. We may all be 99.9% the same in our genetic make-up, but the 0.1% really makes all the difference, and we need to recognize this if we are to move towards fulfilling the possibilities of personalized medicine."
About OGI
The Ontario Genomics Institute (OGI) is a private, not-for-profit corporation focused on using world-class research to create strategic genomics resources and accelerate Ontario's development of a globally-competitive life sciences sector. Through its relationship with Genome Canada, the Ontario Ministry of Research and Innovation (MRI), and other private and public sector partners, OGI works to: identify, attract and support investment in Ontario-led genomics research; catalyze access to and the impact of genomics resources; and, raise the visibility of genomics as well as its impact and associated issues. For more information on OGI, please visit www.OntarioGenomics.ca
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