Public Health Genomics: Research projects
Genomics and Public Health: Building Public Goods?
The Genomics and Public Health: Building Public Goods? (GHP) project addresses the social, ethical and legal issues within four interlinking themes in relation to public health genomics: a) State powers, b) Privacy, c) Stakeholders' perceptions, and d) Public involvement. With the input of scientists, health professionals and policy makers, Beatrice Godard is leading the review on stakeholders’ perceptions and the related policy. The project has been launched in 2006 and is funded by Genome Quebec and Genome Canada.
Why focus on the Stakeholders?
The present state of genomic knowledge and the complexity of diseases are such that the use of genetic information to benefit health is difficult. The way forward in establishing a clear evidentiary base in public health genomics calls for a greater partnership and coordination between genomics and public health research. Which uses of genomic information towards public health action should be studied and developed? How can genome scientists and public health professionals ensure that information about gene-environment interactions, on a... Read more
The Genomics and Public Health: Building Public Goods? (GHP) project addresses the social, ethical and legal issues within four interlinking themes in relation to public health genomics: a) State powers, b) Privacy, c) Stakeholders' perceptions, and d) Public involvement. With the input of scientists, health professionals and policy makers, Beatrice Godard is leading the review on stakeholders’ perceptions and the related policy. The project has been launched in 2006 and is funded by Genome Quebec and Genome Canada.
Why focus on the Stakeholders?
The present state of genomic knowledge and the complexity of diseases are such that the use of genetic information to benefit health is difficult. The way forward in establishing a clear evidentiary base in public health genomics calls for a greater partnership and coordination between genomics and public health research. Which uses of genomic information towards public health action should be studied and developed? How can genome scientists and public health professionals ensure that information about gene-environment interactions, on a population level, is used appropriately? How to ensure that genetic tests are accessible and that individuals in the population have access to attendant interventions whose effectiveness and safety have been established? Genome and epidemiology scientists, public health professionals and policy makers have a crucial role in developing and integrating genomics into health promotion and disease prevention programs.
The mechanisms for translating genomic information into public health action in compliance with regulatory and ethical frameworks need also to be studied. Previous work on emerging responsibilities in medical genetics is helpful and lays the foundations for the present study. Yet, the interface between genomic research and public health research leads to a set of concerns that are different from the traditional clinical practice involving genetic information. Attention should be paid to this interface between public health and the law, between individual and collective rights, the informed consent process in traditional public health programs and finally, between public health surveillance and information systems.
This component of our research aims to assist policy-makers and public health professionals to ethically integrate genomics into public health research, policy and practice. Access to genomic databases for secondary uses, access to genetic testing, availability of proven interventions and potential discrimination against and stigmatization of individuals and groups call for leadership by health professionals and policymakers.
Results will allow public health agencies to develop mechanisms that support the integration of genomics across its programs. The effectiveness of mechanisms will hinge on many factors, including targeting appropriate audiences with interventions that result in health promotion and disease prevention.
Selected bibliography
Condit, C.M. (2007) "How Geneticists Can Help Reporters to Get Their Story Right" Nature Reviews Genetics 8(10): 815-20.
Farmer, Y., Godard, B. (2007) "Public Health Genomics (PHG). From Scientific Considerations to Ethical Integration" Genomics, Society and Policy 3: 14-27.
Godard B., Knoppers B.M. (2006) "Emerging Duties Re Professional Disclosure" in Genetic Testing: Care, Consent, and Liability edited by Sharpe, N.F. and Carter, R.F. (New York: John Wiley & Sons inc.), p. 409-15.
Godard, B., Marshall, J., Laberge, C., Knoppers, B.M. (2004) "Strategies for Consulting with the Community: The cases of four large-scale genetic databases" Science and Engineering Ethics 10(3): 1-21.
Federal, Provincial and Territorial Advisory Committee on Population Health for Meeting of the Ministers of Health, Minister of Public Works and Government Services of Canada. (1999) Toward a Healthy Future, Second Report on the Health of Canadians. Charlottetown, P.E.I.
Khoury, M., Davis, R., Gwinn, M., Lindegren, M.L., Yoon, P. (2005) "Do We Need Genomic Research for the Prevention of Common Diseases with Environmental Causes?" Am J Epidemiol 161(9): 799-805.
Motulsky, A. (2000) "Some Future Directions in Medical Genetics" Am J Hum Genet 7(4): 1190-91.
Organization for Economic Co-operation and Development. (2006) Creation and Governance of Human Genetic Research Databases. Online (Accessed April 2009).
Department of Health and Human Services – Secretary’s Advisory Committee on Genetics, Health and Society. (2007) Policy Issues Associated with Undertaking a New Large U.S. Population Cohort Study of Genes, Environment, and Disease. Online (Accessed April 2009).
Thomas, J.C., Irwin, D.E., Zuiker, E.S., Millikan, R.C. (2005) "Genomics and the Public Health Code of Ethics" Am J Public Health 95(12): 2139-43.
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Publications
Knoppers B.M., Leroux T., Doucet H., Godard B., Laberge C., Stanton-Jean M., Fortin S., Cousineau J., Monardes C., Girard N., Levesque L., Durand C., Farmer Y., Dion-Labrie M., Bouthillier M.E., Avard D. (2010) "Framing genomics, public health research and policy: points to consider" Public Health Genomics 13(4): 224-34. Epub 2010 Apr 15. Free access
Stanton-Jean, M., Godard, B., “Santé, éthique et bien commun : que voulons-nous dire? », in Knoppers, B.M. & Y. Joly (eds), Le bien commun et la santé, Montréal : Ed. Thémis, 2008.
Farmer, Y., Godard, B. (2007) "Public health genomics (PHG). From scientific considerations to ethical integration" Genomics, Society and Policy 3(3): 14-27.
Date: From 2005 to 2008
Research Team : Béatrice Godard
Funding: Genome Quebec and Genome Canada
Contact:
Béatrice Godard
