Genomics and Public Health Research: Building Public “Goods”? Divergences and Convergences of Views in Four Stakeholder Groups

Beatrice      Godard; Lise      Levesque

Abstract

Stakeholders’ views are invaluable in the process of garnering the resources and infrastructure necessary for public health genomics research and introducing efficient communication mechanisms and appropriate ethical frameworks. This research is crucial as pharmacogenomics applications are advancing towards public health. In order to learn about the perceptions stakeholders have towards the relevance of genomics for public health research and the related issues, we conducted qualitative social science research and interviews with genomics researchers, epidemiologists and virologists, ethics and law specialists, and decision makers. A thematic data analysis was undertaken to extract their views. Stakeholders acknowledged that genomics holds substantial potential to drive forward scientific advances. There was however no consensus on the types of interventions needed to integrate genetic information into public health research strategies. Despite their positive expectations, the respondents asserted that the integration of these two fields have to be in the public’s best interest. In particular, the importance of scientific evidence on genomic determinants of health was emphasized. Proof of transparency and accountability also needed to be taken into account. These elements were deemed to be crucial to counter the potential rejection of research at the confluence of genomics and public health, to protect individuals and engage scientists in “sound science”. Even though collective values have been an integral part of public health genomics, this new field of inquiry warrants further exploration about how, and to what ends interdisciplinary research should be carried out, the importance of efficient communication mechanisms for knowledge translation and a widening of the scope of research ethics in the near future. To the best of our knowledge, this is the first research study empirically describing public health genomics stakeholders’ views on the integration of genomics into public health research and related ethical issues.

Keywords: Empirical ethics, genomics medicine, innovation diffusion, knowledge end-users, personalized medicine, public health genomics, stakeholders

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