Health Disparities & Policy

Genetics Equity Network (GenEtwork)

A new era of healthcare influenced by the explosion of genetic knowledge and technology is emerging. Scientists are developing medicines that are tailored to an individual's genetic make-up; genetic tests are being used to determine one's chances of developing certain diseases; and researchers are finding ways to customize diets based on a person's genetic profile and lifestyle. These are just some examples of the practical applications of genetic research that evoke both excitement and concern about its impact on the health of our society. Public policy creates guidelines for fair use of and access to genetic information and technologies in our communities. Therefore, input from diverse community groups is essential to ensure that public policies concerning genetics are developed to reduce, not increase, health problems that unevenly impact minority communities.

GenEtwork is developing an online interactive resource for discussion about and response to current or proposed public policies related to genetics. The National Human Genome Center at Howard University (NHGC), the University of Michigan Center for Public Health and Community Genomics (CPHCG), and the Joint Center for Political and Economic Studies have collaborated to host the GenPal forum. The ultimate goal of GenEtwork is to facilitate the active participation of a more diverse group of stakeholders in the development of genetics-related policies at the local, state, and national levels. As part of the GenEtwork, community groups will have an audible voice and play a meaningful role in shaping genetics policy.

National Workshop on Achieving Equity in Genetics Policy through Diversity in Decision Making

The National Human Genome Center at Howard University (NHGC), the University of Michigan Center for Public Health and Community Genomics (CPHCG) and the Health Policy Institute of the Joint Center for Political and Economic Studies collaborated to host this workshop in October 2006 at Howard University in Washington D.C. to launch GenPal. The goals of this workshop were to

1. stimulate interactions among leadership of key organizations committed to reducing health disparities,
2. discuss how decisions get made by institutions shaping genetics policies and
3. consider ways in which a more diverse group of stakeholders can develop meaningful roles in shaping these policies.

Genomics, Community, and Equity: A Continuing Dialogue

Genomics, Community and Equity: A Continuing Dialogue, a partnership project between the Center for Public Health and Community Genomics (CPHCG) at the University of Michigan School of Public Health and the National Community Committee (NCC) of the CDC-funded Prevention Research Centers (PRCs), was carried out during the 2007 calendar year. The 5 NCC members within the 10-state focus area for this project (Michigan, Illinois, Iowa, Missouri and Minnesota) organized face-to-face and web-based educational and dialogue communications in their respective geographic areas, with over-all guidance, educational and technological resources provided by CPHCG, local educational resources provided by the state health departments in their respective states, and both educational and dissemination support by the National Network of Libraries of Medicine (with special emphasis on health professionals) and their respective state associations of public libraries (with special emphasis on lay members of their communities). Educational resources were provided by the National Human Genome Research Institute, the National Office of Public Health Genomics (CDC) and genomics experts at the University of Michigan. On October 12, 2007, approximately 450 people, most of whom were grass-roots community members, participated in 5 forums in 5 states. Participants came from the rural reaches of Missouri and Iowa, the urban neighborhoods of Flint, MI, St. Paul, MN, and Chicago, IL, and represented an incredibly diverse group of traditions, cultures, SES levels, and occupations.

Communities of Color and Genetics Project

A major function of the Center for Public Health and Community Genomics is to make sure that the community-at-large is brought into the process of developing policies related to genomics and is also informed of the benefits and risks associated with using genomics in the public health context. Therefore, the Center encourages the engagement of the community in carrying out research, policy and program planning, and outreach efforts. The leadership of Community Based Organizations (CBOs) will be encouraged to participate in Center activities in order to ensure that community voices are heard. Additionally, the Center will advise public health organizations on methods of engaging communities in policy and program development.

If genomics is going to be applied effectively in public health, the community will need to play a significant role. Public health genomics differs from medical genetics since public health often promotes health by encouragement, persuasion and sometimes by compulsion. Various ethical, legal, and social concerns have been raised by the knowledge gained from the mapping and sequencing of the human genome. These concerns include, but are not limited to: discrimination, stigmatization, privacy, lack of sufficient counseling, confidentiality, and lack of access to testing and to treatment suggested by test results. In response to historical events such as the Tuskegee Syphilis Study and Sickle Cell testing, communities of color have voiced other concerns such as exploitation in research, fears about widening of health disparities, and lack of trust in government and health care. Education of the public and engagement of the community are keys to maximizing benefits and avoiding harms associated with the integration of genetics into public health practice.

The willingness of the public to learn about genetics, support its use, and to recommend policies that ensure benefits are available to all was demonstrated through the Communities of Color and Genetics Project (CCGP). This project was funded by the National Human Genome Research Institute (NIH) and was headquartered at the University of Michigan School of Public Health. It has been carried out as a partnership between the University of Michigan, Michigan State University, Tuskegee University, and 15 African American and Latino community-based organizations in Michigan and Alabama. A series of recommendations on genetics policy resulted from a series of community dialogues hosted by the community-based organizations. This project highlighted the special concerns of African-American and Latino community members that must be addressed. The two major lessons of the project are

1. dialogue can be an effective method to address morally controversial and social policy issues in a rational forum and
2. there are various distinct concerns related to genetics, especially in African-American and Latino communities.

Recommendations pertaining to the following areas were produced:

1. trust/distrust,
2. education,
3. privacy,
4. genetic testing,
5. access to genetic testing,
6. genetic research, and
7. playing god/perfect children.

The project highlights the importance of involving community members in developing policy recommendations.

This website was supported by cooperative agreement (U10/CCU525039-01) from the Centers for Disease Control and Prevention. The content is solely the responsibility of the University of Michigan Center for Public Health and Community Genomics and does not necessarily represent the official views of the Centers for Disease Control and Prevention.