Framing Genomics, Public Health Research and Policy: Points to Consider

Abstract

Genetic information can be used to target interventions that improve health and prevent disease. Indeed, the results of population genomics research could be useful for public health and national pandemic plans. Yet, firm scientific evidence originating from such research and the indicators of the role of health determinants, gene-gene and gene-environment interaction remain to be assessed and validated before being integrated into pandemic plans or public health programmes. It is not clear what is the role of the State in research on the elucidation of the determinants of gene-gene and gene-environment interactions and how, when, and if such data can be accessed and used for such planning. Over a period of 3 years, we sought to address these questions by gathering data and literature relevant to research in public health genomics, preparing issues papers and, finally, consulting with stakeholders on a provisional ‘points to consider’ document at various times. Examining in turn the issues of privacy, State powers, stakeholder perceptions, and public participation, we propose in this article, for each of these themes, a series of recommendations aiming to provide guidance on the role of the State in the use of genomic information for public health research, prevention and planning.

Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions

“…Our findings support a position for which others have argued: biobanks should be thought of generally as a public good to be used for the public benefit. 14,30,31 Given the relatively minor physical risks involved, policies that require specific consent for each new study are generally unwarranted. Furthermore, our findings suggest that specific consent policies could serve to skew participant's perceptions, such that they might perceive greater individual risks and individual benefits than is otherwise warranted by the nature of the research.…”

“…As such, the standards set to protect individuals in the context of clinical research may be inappropriate for biobanks. 13,14 This is not to deny that there may be other significant risks associated with biobanks; privacy risks in particular have been singled out as worthy of special attention. 15 However, even such informational risks might be viewed differently from either an individualistic or a public perspective.…”

Integrating Genetic Studies of Nicotine Addiction into Public Health Practice: Stakeholder Views on Challenges, Barriers and Opportunities

“…The potential value of genetic information in public health programs has been laid out clearly by Khoury et al [27,30,31,32], the director of the National Office of Public Health Genomics at the Centers for Disease Control and Prevention, and others [23,33,34,35]. Areas for partnerships between the 2 fields include a dedication to prevention; and a strong commitment to evidence-based health approaches and health services research [31].…”

Genomics and Public Health: Translating Research into Public Benefit

“…Public health genomics will be in the vanguard: leading, questioning, translating, and applying contemporary genetic knowledge into clinical settings as we respond to advancing technologies and the evolution of societal values. Knoppers et al [9] set out a framework for how research might be integrated into public health policy and planning. The aim is to translate genomics knowledge into disease prevention and health promotion.…”