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Making Every Voice Count: Public Consultation on Genetics, Environment, and Health

Making Every Voice Count was announced in September 2006 to support research that will obtain wide societal input to inform the design and implementation of a possible large U.S.-based longitudinal cohort study of the role of genes and environment in health and disease. The project has three specific aims: 1) Develop and evaluate informational materials describing the goals and design considerations of a large cohort study; 2) Assess public attitudes about a proposed cohort study at the individual level; and 3) Engage citizens and community leaders to assess attitudes and pilot test methods of initiating community-based dialogue.

Making Every Voice Count is being conducted by the Genetics & Public Policy Center of Johns Hopkins University [dnapolicy.org] with partial support from the Ethical, Legal and Social Implications Research Program at the National Human Genome Research Institute.

This public consultation project has been funded in two stages:

1. RFA HG-06-008: [grants.nih.gov] Public Consultation to Inform the Design of Possible Large-Scale Studies of Genes and Environment in Common Disease (U01)
   
   
2. RFA HG-09-004: [grants.nih.gov] Follow-up Public Consultation to Inform the Design of a Possible Longitudinal Cohort Study of the Role of Genes and Environment in Health and Disease: Limited Competition (U01)

Genetics & Public Policy Center: Making Every Voice Count [dnapolicy.org]

Genetics & Public Policy Center: Public Consultation Project Description [dnapolicy.org]

Publications

• Subjects Matter: A Survey of Public Opinions About a Large Genetic Cohort Study [ncbi.nlm.nih.gov], Nov. 2008
• Public Opinion about the Importance of Privacy in Biobank Research [cell.com], Oct. 2009

Contacts

Kathy Hudson, Johns Hopkins University [bioethicsinstitute.org]

Teri Manolio, NHGRI

Jean McEwen, NHGRI

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Last Updated: November 3, 2009