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.
To support members who frequently grapple with ethical issues, a number of PR professional associations developed models for ethical decision making that they make available to members for reference and professional development purposes. However, the models put forward are, clearly, inadequate for tackling more complex ethical issues. The purpose of this study is thus to supply theoreticians and practitioners with conceptual tools for more effectively thinking through this complexity in ethics decisions. In meeting this objective, we initially set out a conceptual framework that comprises the model's field of application and theoretical underpinnings, as well as advanced techniques for weighting, balancing interests and managing reputation. In tandem with the theorization, we look at some applications for the conceptual framework through case studies.
Large-scale population biobanks, which aim to collect biological tissues, personal health information, and genomic data, are being introduced worldwide with the promise of increasing knowledge on chronic diseases such as diabetes and heart disease. Experts recognize the need for public participation to address the many social, legal and ethical complexities raised by the introduction of biobanks for public health research. However many researchers and decision makers struggle with how to promote public participation. This paper presents six issues that public participation must address. These issues are then applied to three large scale genetic biobank projects: CARTaGENE, Generation Scotland, and the United Kingdom Biobank. Finally, the efforts of these biobanks will be compared to the British Columbia Biobank deliberation project, which implemented a deliberative public participation experiment on biobanking.
Recent advances in our understanding of the human genome have raised high hopes for the creation of personalized medicine able to predict diseases well before they occur, or that will lead to individualized and therefore more effective treatments. This possibility of a more accurate science of the prevention and surveillance of disease also illuminates the field of public health, where the translation of genomic knowledge could provide tools enhancing the capacity of public health authorities to promote health and prevent diseases. But beyond scientific considerations, the use of genomics in public health research and interventions gives rise to several ethical and social issues of great importance. Considering the impact that PHG could have on the future of public health while still paying attention to the uncertainty surrounding the use of genomic databases for the benefit of populations, this article seeks to explore the promise of genomics in public health and the ethical issues that emerge from its application.
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