Genomic discoveries will increasingly advance the science of medicine. Limited genomic literacy may adversely impact the public’s understanding and use of the power of genetics and genomics in health care and public health. In November 2011, a meeting was held by the National Human Genome Research Institute to examine the challenge of achieving genomic literacy for the general public, from K-12 to adult education. The role of the media in disseminating scientific messages and in perpetuating, or reducing, misconceptions was also discussed. Workshop participants agreed that genomic literacy will only be achieved through active engagement between genomics experts and the varied constituencies that comprise the public. This report summarizes the background, content, and outcomes from this meeting, including recommendations for a research agenda to inform decisions about how to advance genomic literacy in our society.

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."

Abstract:The authors describe the rationale and initial development of a new collaborative initiative, the Genomic Applications in Practice and Prevention Network. The network convened by the Centers for Disease Control and Prevention and the National Institutes of Health includes multiple stakeholders from academia, government, health care, public health, industry and consumers. The premise of Genomic Applications in Practice and Prevention Network is that there is an unaddressed chasm between gene discoveries and demonstration of their clinical validity and utility. This chasm is due to the lack of readily accessible information about the utility of most genomic applications and the lack of necessary knowledge by consumers and providers to implement what is known. The mission of Genomic Applications in Practice and Prevention Network is to accelerate and streamline the effective integration of validated genomic knowledge into the practice of medicine and public health, by empowering and sponsoring research, evaluating research findings, and disseminating high quality information on candidate genomic applications in practice and prevention. Genomic Applications in Practice and Prevention Network will develop a process that links ongoing collection of information on candidate genomic applications to four crucial domains: (1) knowledge synthesis and dissemination for new and existing technologies, and the identification of knowledge gaps, (2) a robust evidence-based recommendation development process, (3) translation research to evaluate validity, utility and impact in the real world and how to disseminate and implement recommended genomic applications, and (4) programs to enhance practice, education, and surveillance. Genet Med 2009:11(7):488 -494.Key Words: decision support, genomics, information, medicine, network, public health T he ongoing success of genome wide association studies (GWAS) in uncovering genetic risk factors for many common diseases has fuelled expectations of a new era of health care based on personalized treatment, early detection, and disease prevention. 1-3 An optimal process is needed for appropriate translation of these new genomic discoveries into practice. The process should include mechanisms for developing an understanding of the relationship between these newly discovered factors and clinical outcomes (clinical validity), and the costs, benefits, and harms of genome-based technologies in real world settings (clinical utility). 4 Furthermore, the process should facilitate the development of evidence-based guidelines for the use of genomic applications 5 ; and appropriate implementation of these applications in practice, including protection of individuals and communities against discrimination based on genetic information. 6 Importantly, advances in genomics should be considered in the context of the larger forces affecting health care delivery in the United States, including escalating costs, differential access to quality health care, and a growing number of uninsured persons in ou...

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 alternative options such as large-scale federal funding and smaller scale, incremental funding solutions proposed. Piggybacking on existing federal breast and colorectal cancer control programs was suggested. Public health departments need to assess what information is now being collected by their state cancer registries. The groups advised that information on cascade screening of relatives be included in toolkits for use by states. Participants stressed incorporation of family history into health department breast cancer screening programs, and clinical HBOC data into state surveillance systems. The carrying out of universal LS screening of tumors in those with colorectal cancer was reviewed. Expansion of universal screening to include endometrial tumors was discussed, as was the application of guidelines recommending cholesterol screening of children 9–11 years old. States more advanced in terms of Tier 1 testing could serve as models and partners with other states launching screening and surveillance p...

The aim of this article is to describe the methods and effectiveness of the Public Engagement in Genetic Variation and Haplotype Mapping Issues (PEGV) Project, which engaged a community in policy discussion about genetic variation research. The project implemented a 6-stage community engagement model in New Rochelle, New York. First, researchers recruited community partners. Second, the project team created community oversight. Third, focus groups discussed concerns generated by genetic variation research. Fourth, community dialogue sessions addressed focus group findings and developed policy recommendations. Fifth, a conference was held to present these policy recommendations and to provide a forum for HapMap (haplotype mapping) researchers to dialogue directly with residents. Finally, findings were disseminated via presentations and papers to the participants and to the wider community beyond. The project generated a list of proposed guidelines for genetic variation research that addressed the concerns of New Rochelle residents. Project team members expressed satisfaction with the engagement model overall but expressed concerns about how well community groups were utilized and what segment of the community actually engaged in the project. The PEGV Project represents a model for researchers to engage the general public in policy development about genetic research. There are benefits of such a process beyond the desired genetic research. (Population Health Management 2012;15:78-89)

A major factor explaining government actors’ failure to mitigate or avert the Flint, Michigan, water crisis is the sheer complexity of the laws regulating how governmental agencies maintain and monitor safe drinking water. Coordination across agencies is essential in dealing with multiple legal arrangements. Public health legal authority and intervention mechanisms are not self‐executing. Legal preparedness is essential to efficiently navigating complex legal frameworks to address public health threats. The Flint water crisis demonstrates the importance of democracy for protecting the public's health. Laws responding to municipal fiscal distress must be consistent with expected norms of democracy and require consideration of public health in decision making. ContextThe Flint, Michigan, water crisis resulted from a state‐appointed emergency financial manager's cost‐driven decision to switch Flint's water source to the Flint River. Ostensibly designed to address Flint's long‐standing financial crisis, the switch instead created a public health emergency. A major factor explaining why the crisis unfolded as it did is the complex array of laws regulating how governmental agencies maintain and monitor safe drinking water. MethodsWe analyzed these legal arrangements to identify what legal authority state, local, and federal public health and environmental agencies could have used to avert or mitigate the crisis and recommend changes to relevant laws and their implementation. First, we mapped the legal authority and roles of federal, state, and local agencies responsible for safe drinking water and the public's health—that is, the existing legal environment. Then we examined how Michigan's emergency manager law altered the existing legal arrangements, leading to decisions that ignored the community's long‐term health. Juxtaposed on those factors, we considered how federalism and the relationship between state and local governments influenced public officials during the crisis. FindingsThe complex legal arrangements governing public health and safe drinking water, combined with a lack of legal preparedness (the capacity to use law effectively) among governmental officials, impeded timely and effective actions to mitigate or avert the crisis. The emergency manager's virtually unfettered legal authority in Flint exacerbated the existing complexity and deprived residents of a democratically accountable local government. ConclusionsOur analysis reveals flaws in both the legal structure and how the laws were implemented that simultaneously failed to stop and substantially exacerbated the crisis. Policymakers need to examine the legal framework in their jurisdictions and take appropriate steps to avoid similar disasters. Addressing the implementation failures, including legal preparedness, should likewise be a priority for preventing future similar crises.

The latest health care legislation, which promotes prevention and health screening, ultimately depends for its success on recognition of people's values concerning the technologies being employed, not just the interventions' technical virtues. Values concerning the deterministic nature of a condition and what groups should be targeted rest on a sense of what is morally, often religiously right in a given health circumstance. This paper looks at a number of leading-edge case examples--breast cancer genetic screening and family decision-making, and newborn screening and biobanks--in examining how the choices made at the individual, family, and societal levels rest on faith in a higher source of efficacy and moral perspectives on the measures that can be taken. Qualitative responses expressing people's attitudes toward these technologies underscore the importance of considering faith-based values in individual decisions and collective policies on their use. These examples are considered in the context of the historic interplay between science and religion and recent definitions and models of health which incorporate physical, emotional, and social elements, and most importantly, are expanding to incorporate the religious and spiritual values domains.

Public health ethics and genetics in public health have in the last decade emerged as fields in their own right. This article describes the ethics component of an "Issues in Public Health Genetics" course uniting the fields of genetics, ethics, and public health. As the third member of the University of Michigan Interdepartmental Concentration in Genetics, the course emphasizes the translation of ethical-social issues into substantive policies. A central tension repeated throughout the course exists between respect for individuals' libertarian interests and the welfare of the entire population. Students become familiar with the process of resolving conflicting values through interactive exercises addressing the health needs of diverse communities. Key lessons in course design are described.