This project represents an effort to give segments of the public an advance look at the emerging genetics technology, to learn from lay and professional communities how they feel about the technology, and to work with these communities in formulating laws, institutional policies, professional standards of practice, and applications to clinical decision-making. While input will be incorporated from ethics experts and law/policy makers, policy recommendations regarding the use of this emerging technology will be grounded in the wide and diverse views of the public and the health care delivery system. The project will focus on the increasing ability to predict traits and predisposition to disease at ever-earlier stages of pregnancy and prior to conception, and the use of the emerging technology in connection with reproductive decisions. The project proposes to develop a process for policy formulation including careful measurements of attitudes and values of the public and subgroups (patients, minorities, women, professionals, etc.). Data and analysis will be accomplished using integrated phases of focus groups, surveys, community dialogues, and a communication process between policy- makers and community representatives. Dissemination activities will include a conference for policy-makers and the public, as well as presenting at or coordinating meetings with various professional groups associated with health law and medical ethics; publications will be directed to both professional and policy making audiences through relevant journals. This project will build upon community dialogue models that have been developed and used in the Oregon Health Decisions project and the Just Caring projects in Michigan and Indiana. These efforts will utilize findings from previous work regarding public and professional attitudes and clinical applications.
| Terry, Sharon F; Christensen, Kurt D; Metosky, Susan et al. (2012) Community engagement about genetic variation research. Popul Health Manag 15:78-89 |
| Bonham, Vence L; Citrin, Toby; Modell, Stephen M et al. (2009) Community-based dialogue: engaging communities of color in the United states' genetics policy conversation. J Health Polit Policy Law 34:325-59 |
| Schulz, Amy; Caldwell, Cleopatra; Foster, Sarah (2003) ""What are they going to do with the information?"" Latino/Latina and African American perspectives on the Human Genome Project. Health Educ Behav 30:151-69 |
