The History & Future of Genetic Counseling in the U.S.

点击翻译按钮获取中文摘要

DESCRIPTION (provided by applicant): We propose to research and write a historical study of genetic counseling in the United States over the past century. We seek both to explore a fascinating and untold story; and to contribute a historically informed perspective to policy debates about the ethics and future of genetic testing and counseling. As genetic information proliferates, genetic counseling and approaches to genetic testing and screening are of the utmost concern to the physical, mental, and public health of Americans. Although our exploration into the human genome will undoubtedly reap remarkable benefits in terms of knowledge and disease prevention, these advances present extraordinary challenges. It is critical that we assess the historical origins and ramifications of these momentous medical developments in order to be better prepared to respond to the difficult and demanding scenarios that we are likely to confront in the coming years. Employing the research methodologies of the social and cultural historian, we will trace the emergence and development of genetic counseling across the twentieth century. Through systematic historical analysis, we hope to reveal the complex relationship between coercion and choice that sits uneasily at the core of genetic counseling. We will disseminate our findings to the genetic counseling community, health workers, historians, and social scientists. This project will result in a book-length history as well as an abridged version geared towards the classroom and published through our University of Michigan Press book series, Conversations in Medicine and Society." In addition, we will present our research and policy recommendations in peer-reviewed journals and lay media sources and at national conferences.