Suchergebnisse

Description: Among the two leading causes of death in the United States, each responsible for one in every four deaths, heart disease costs Americans $300 billion, while cancer costs Americans $216 billion per year. They also rank among the top three causes of death in Europe and Asia. In 2012 the University of Michigan Center for Public Health and Community Genomics and Genetic Alliance, with the support of the Centers for Disease Control and Prevention Office of Public Health Genomics, hosted a conference in Atlanta, Georgia to consider related action strategies based on public health genomics. The aim of the conference was consensus building on recommendations to implement genetic screening for three major heritable contributors to these mortality and cost figures: hereditary breast and ovarian cancer (HBOC), familial hypercholesterolemia (FH), and Lynch syndrome (LS). Genetic applications for these three conditions are labeled with a "Tier 1" designation by the U.S. Centers for Disease Control and Prevention because they have been fully validated and clinical practice guidelines based on systematic review support them. Methodology: The conference followed a deliberative sequence starting with nationally recognized clinical and public health presenters for each condition, followed by a Patient and Community Perspectives Panel, working group sessions for each of the conditions, and a final plenary session. The 74 conference participants represented disease research and advocacy, public health, medicine and nursing, genetics, governmental health agencies, and industry. Participants drew on a public health framework interconnecting policy, clinical intervention, surveillance, and educational functions for their deliberations. Results: Participants emphasized the importance of collaboration between clinical, public health, and advocacy groups in implementing Tier 1 genetic screening. Advocacy groups could help with individual and institutional buy-in of Tier 1 programs. Groups differed on funding strategies, with ...

<b><i>Introduction:</i></b> To date scientists and religious leaders have not yet engaged in sustained face-to-face conversation concerning precision public health-related genetic technologies. <b><i>Objectives:</i></b> To elucidate areas of commonality and divergence in scientists' and religious leaders' views of precision genetic technologies, and extract lessons conveyed by religious leaders to scientists, and scientists to religious leaders through participatory dialogue. <b><i>Methods:</i></b> Six 1.5-h dialogue sessions were held between 6 religious leaders, 8 University of Michigan scientists, and 3 additional public health/genetic counseling graduate students between October 2016 and September 2017, followed by an open conference at the Ann Arbor Public Library (<i>n</i> = 46). Statements were organized into thematically arranged duets comparing views of scientists and religious leaders. Duets were further ordered into interpretive levels. Comparative techniques were used to assure category agreement and face validity. <b><i>Results:</i></b> The analysis yielded 20 duets and 3 interpretive levels (expositional; implications and consequences; and integrative, bridging concepts). Scientists emphasized the value of epigenetic testing for health promotion, and cost saving for some forms of early genetic testing for adult-onset conditions. Religious leaders stressed care for an individual's willingness to change over technical fixes for behavioral conditions and, together with public participants, the importance of allocating money for societal needs. Both expressed caution on the use of nuclear transfer for mitochondrial DNA replacement and secondary uses of genetic data. Lay conference participants pointed towards a middle ground on the release of genetically edited mosquitoes for disease eradication. <b><i>Discussion:</i></b> Scientists stressed the value of professional guidance; religious leaders listened to family needs. Dialogues met four literature-based criteria for stakeholder involvement in deliberative processes. <b><i>Conclusion:</i></b> While scientists and religious leaders differ in their points of emphasis and faith orientations (professional competency versus drawing on compassion), they can successfully collaborate in reaching mutual understanding and specific areas of agreement on precision genetic technologies relating to public health.

Engaging communities of color in the genetics public policy conversation is important for the translation of genetics research into strategies aimed at improving the health of all. Implementing model public participation and consultation processes can be informed by the Communities of Color Genetics Policy Project, which engaged individuals from African American and Latino communities of diverse socioeconomic levels in the process of "rational democratic deliberation" on ethical and policy issues stretching from genome research to privacy and discrimination concerns to public education. The results of the study included the development of a participatory framework based on a combination of the theory of democratic deliberation and the community-based public health model which we describe as "community-based dialogue."