91.02 Genomics and public health: Building public "good?"  Stakeholders' point of view

Wednesday, April 29, 2009
Sadrivaan A and B (The Hilton Istanbul Hotel )
Beatrice Godard, Ph.D. Université de Montréal, Canada
Lise Levesque Université de Montréal, Canada
Background: Genomic research has generated a growing corpus of knowledge about genetic susceptibilities to common diseases and infections, which could be used in public health research, for example for the evaluation of disease risk. However, the relevance of genomics for public health is the object of debates while it raises ethical questions. Objective and method: To learn about the perceptions the stakeholders have towards the relevance of genomics for the public health research and the related issues, we interviewed policy makers (7), epidemiologists and virologists (7), genomics researchers (9), and ethics and law specialists (10) concerned by the public health genomics issues. Results: Undoubtedly, genomics holds great scientific potential. Nevertheless, although the positive expectations of the integration of genomics in public health research, biobanking, as a common good, has to be in the public interest and issues related to framing research such as consent allowing secondary uses and mechanisms for protecting access to data need to be considered. Moreover, the relevance of integrating genomics into public health research should be assessed. Solid scientific evidence and indicators of health determinants for public health genomics research need to be evaluated and justified. Proof of transparency and accountability need also to be considered to a lesser extent. Transparency, accountability and balanced communication are means of countering the potential rejection of research but also of protecting individuals and engaging scientists in “good science”. To that end, education of stakeholders including citizens about genomics should be strengthened. Conclusion: The integration of genomics into public health is an "audacious amalgam" that simultaneously raises hopes and concerns. Even though collective values are inherent in public health activities, this new interdisciplinary area raises questions about interdisciplinary research, communication and public health ethos vs research ethics.

Learning Objectives: 1. To learn about the ethical issues raised by public health genomics from a stakeholder perspective 2. to recognize and identify ethical issues linked to public health genomics 3. through the development of a "points to consider" document, to provide a coherent reflection on the role of the stakeholders in the possible use of genomic information for the understanding of infectious and communicable diseases, as well as for disease prevention and health promotion.

Sub-Theme: The growing importance of public health genetics