Pharmacogenomics: Research projects
Consulting ethno-cultural communities for large-scale genomic databases: a project on interests and values towards pharmacogenomics research
Large-scale genetic databases are being developed in several countries around the world. These databases concern the general population, as opposed to, particular patient groups or families. The amount of information gathered on the individual, as well as, the types of diseases studied constitute a divergence from the genetic registers of the past as well as from the gene-hunting research of today. Another change in research paradigm is the desire for public consultation. These databases depend on public participation and acquiescence. Therefore it appears important to encourage a free, open and useful dialogue among those involved. Many factors impel investigators to engage communities even though it is not legally required. It is difficult even for highly knowledgeable people to understand the nature and purpose of large-scale genomic databases. Due to the scale of the contemporary public genomic databases, it is also important to consult a large contingent of the general public. A process of ongoing dialogue facilitates greater comprehension. It also elicits a response to the potential concerns of participants. Additionally, these consultations are... Read more
Large-scale genetic databases are being developed in several countries around the world. These databases concern the general population, as opposed to, particular patient groups or families. The amount of information gathered on the individual, as well as, the types of diseases studied constitute a divergence from the genetic registers of the past as well as from the gene-hunting research of today. Another change in research paradigm is the desire for public consultation. These databases depend on public participation and acquiescence. Therefore it appears important to encourage a free, open and useful dialogue among those involved. Many factors impel investigators to engage communities even though it is not legally required. It is difficult even for highly knowledgeable people to understand the nature and purpose of large-scale genomic databases. Due to the scale of the contemporary public genomic databases, it is also important to consult a large contingent of the general public. A process of ongoing dialogue facilitates greater comprehension. It also elicits a response to the potential concerns of participants. Additionally, these consultations are purported to be for the public’s benefit, not simply to solicit support, thus, it is crucial that they be carried out in an unbiased, ethically sensitive way. Indeed, due to the novelty of public consultation in areas of science and technology, it is important to embark on a careful understanding of public opinion in order to help improve discussion. Conducting community consultations for pharmacogenomics research is delicate: issues of representation, social identity, internal politics and cross-cultural differences abound. Conflicts may arise when individual and community interests conflict. There is a growing public concern that protection for communities in pharmacogenomics research are needed. Although there are no guarantees that a community consultation will prevent harms on the basis of research findings, openness to discussion creates a forum for members to learn how to deal with scientific conclusions and potential outcomes of research.
This project aims to examine the development of large-scale genomic databases, in particular for pharmacogenomics research, from the perspective of different ethno-cultural communities. These projects aim to map genetic variation in a large reference population. The recruitment of volunteers should be unbiased with regards to disease or ethnic origin and should be representative of the population density. Since some diseases occur more frequently, though not exclusively, in a defined population, it is anticipated that among the different communities, some are likely to be aware of the issues that could arise during genomic databases projects while others not. Our goal is to examine if the range of relevant issues and perceptions will be represented in the selected communities, as well as to examine divergent or convergent views and perspectives between these cultural groups. The methodology will consist of interviewing, in-depth, key informants within each community.
The consultation of cultural communities about the implementation of large-scale genomic databases has been rare. Research on their understanding of genetics has barely scratched the surface. Aggregated individual opinion is not a sufficient measure of what will happen in the public sphere, due to the intensity of commitment, and the degree of organization and resources. This project aims to provide a crucial context for understanding the population-specific implications of research on human genetic variation.
Investigators: Godard Beatrice, Égalité Nathalie, Fortin Marilyn
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Publications
Godard, B. "L’implication du public dans le développement et l’application des savoirs scientifiques" in Bouffard, C. & R. Drouin (eds). Génétique, partage des connaissances et appropriation des savoirs. Sainte-Foy, PUL, (sous presse).
Godard, B., Ozdemir, V., Fortin, M., Egalité, N. (2009) "Ethnocultural community leaders’ perceptions on population specific genomics research and large scale biobanks: A qualitative research study" Public Understanding of Science (in press). OnlineFirst (Accessed June 2009).
Godard, B. "La génomique vue par des chercheurs et des leaders de différentes communautés ethno-culturelles: limites au progrès scientifique?" in Hervé, C., Knoppers, B.M., & Molinari, P. (Eds). L’humain, l’humanité et le progrès scientifique. Paris: Ed. Dalloz, 2009.
Égalité, N., Ozdemir, V., Godard, B. (2007) "Pharmacogenomics Research Involving Racial Classification: Qualitative Research Findings on Researchers’ Views, Perceptions and Attitudes Towards Socio-Ethical Responsibilities" Pharmacogenomics 8(9): 1115-26.
Godard, B., Marshall, J., Laberge, C. (2007) "Community engagement in genetic research: Results of the first public consultation for the Quebec CARTaGENE Project" Community Genetics 10, 3: 147-158.
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.
Date: From 2005 to 2008
Research Team : Béatrice Godard
Funding: Canadian Institutes of Health Reseach (CIHR)
Contact:
Béatrice Godard
