Populations and Genetics: Legal and Socio-Ethical Perspectives

By Bartha Maria Knoppers | Go to book overview

The Engagement of Consumers in Genetics
Education: Lessons Learned

Michele A. Lloyd-Puryeari, Penny Kylerii, Gloria Weissmaniii

iGenetics Services Branch, MCHB/HRSA, USA. iiGenetics Services Branch, MCHB/HRSA, USA iiiBureau of Health Resources Development, USA


Introduction

While the mapping of the human genome has been a monumental scientific achievement, it leaves us with significant gaps in our knowledge about the health, as well as the ethical, legal and social, implications of genetics. Health educators and health care and public health professionals who work daily at the interface between health systems and communities face unprecedented challenges and opportunities as they try to assist communities to utilize that genetic knowledge in ways that will be helpful to them. Policymakers face similar challenges as they try to effectively communicate and educate their constituencies regarding the importance of genetic information, resources, and services.

To address some of these challenges, the Genetic Services Branch, Health Resources Services Administration (HRSA) has entered into a fiveyear cooperative agreement with the March of Dimes Birth Defects Foundation to conduct the Genetic Education Needs Evaluation (GENE) project. The GENE project has as collaborative partners the Genetic Alliance and Family Voices, both coalitions of family support groups. The purpose of GENE project is to engage underserved communities in developing a process that will enable them to use genetic information to make more informed choices about their health. The project is also designed to improve these communities’ access to culturally and linguistically appropriate genetics information, resources, and services. GENE is based on the assumption that if the public is inadequately prepared to assess the uses of genetic knowledge

Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.

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