The mission of the University of Toronto MHSc in Bioethics International Stream is to strengthen individual and institutional leadership capacity in bioethics, with particular emphasis on research ethics, in low- and middle-income countries. We work in partnership with existing and emerging programs in strong institutions in the developing world to identify leaders who will make those programs successful and sustainable.
Accompanying the increase in research activities worldwide, particularly in developing countries where the citizens are poor, vulnerable and un-empowered, is increasing concern about the ethical nature of these studies, the rights of participants, the need to protect vulnerable populations, issues relating to benefitssharing, equity and justice. It has therefore become necessary to equip researchers, particularly in developing countries with state-of-the-art knowledge of research ethics.
Duke's Center for the Study of Public Genomics will gather and analyze information about the role of publication, data sharing, materials-sharing, patenting, database protection, and other practices that affect information flow in genomics research and development. Managing intellectual property and ensuring the preservation of a robust "scientific commons" could prove as difficult as or more so than the science and technology, and could have as large of an impact on what results are produced, who has access to them, and how fairly they are distributed.
This program will serve its mission to promote responsible research in DRC and in Francophone Africa by consolidating the Center Interdisciplinaire de Bioethique pour l'Afrique Francophone (CIBAF) at the Kinshasa School of Public Health (KSPH) and by leveraging CIBAF's resources to enhance ethics capacity locally, regionally and internationally.
Probing Minority Views on Genetic Testing and Research Grant # F31HG004124 Grant period: 08/23/2006 - 08/22/2009 Minorities, particularly African Americans and Hispanics, are under-represented when it comes to utilizing genetic testing and participating in genetic research. Previous studies, largely survey-based, have noted this situation but have not explained the reasons for this disparity. My research program is geared toward understanding the views of minorities concerning genetic testing and concerning their participation in genetic research.
Over the past two decades, forensic DNA profiling has become an important tool in the investigation of human rights abuse and genocide. There is, however, little understanding of the ethical, historical, political, psychosocial, or policy dimensions of this application of genetic technology. The lack of a well-developed body of relevant research, and few regulations to guide the implementation of humanitarian DNA identification projects, means that organizations and individuals must develop their own ad hoc rules and procedures for the identification process.
Forensic DNA profiling is increasingly becoming a standard tool in the search for missing people in the aftermath of mass violence and mass disaster. Yet, there has been very little systematic effort to identify and analyze the major ethical and policy challenges associated with this new use of genetic technology. Thus, stakeholders involved in post-conflict and post-disaster investigations have had to develop their own ad hoc rules and ethical principles for the identification process.
H3Africa provides an unprecedented opportunity to study genetic and genomic technologies into research, diagnosis, intervention, and treatment for sickle cell disease (SCD) in Africa. As such, involving a few African Centers already involved in the forefront of Sickle Cell Disease Research in Africa with moderate expertise on psychosocial research (Cameroon), newborn screening (Ghana) or genomics studies (Tanzania) could serves as a reservoir for rigorous examination of a wide range of accompanying ethical, psychosocial, cultural, and policy issues.
Despite the vast diversity of its populations, genetic studies in Africa have been limited. African populations, Malians in particular, have a high rate of intra-ethnic and consanguineous marriage, resulting in increased prevalence of autosomal recessive diseases. Family-based genetic studies can be limited in developed countries due to small sib ships. The average fertility rate in Mali is over 6 births per woman, offering a unique opportunity to find new disease genes or mutations that can then be studied in other populations.
Sub Saharan Africa with only 11% of the world's population has more than 24% of the global disease burden, over 70% of the world's HIV infected persons, and only 3% of the global work force, and spends less than 1% of the world financial resources on health. In the case of Uganda, a country of 35 million people who suffer with a heavy disease burden, there are only 7 Ugandan specialists trained at masters level in bioethics.