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

描述(申请人提供)：我们建议研究并撰写一份关于美国过去一个世纪遗传咨询的历史研究。我们寻求探索一个引人入胜而不为人知的故事，并从历史的角度为关于基因检测和咨询的伦理和未来的政策辩论做出贡献。随着遗传信息的激增，遗传咨询以及基因测试和筛查的方法对美国人的身体、心理和公共健康都是最令人担忧的。尽管我们对人类基因组的探索无疑将在知识和疾病预防方面获得显著的好处，但这些进展提出了非同寻常的挑战。至关重要的是，我们必须评估这些重大医学发展的历史渊源和影响，以便更好地准备应对我们在未来几年可能面临的困难和苛刻的情况。运用社会和文化历史学家的研究方法，我们将追溯遗传咨询在整个二十世纪的产生和发展。通过系统的历史分析，我们希望揭示强迫和选择之间的复杂关系，这一关系令人不安地处于遗传咨询的核心。我们将把我们的发现传播给遗传咨询界、卫生工作者、历史学家和社会科学家。这个项目将产生一本书一样长的历史和一个面向课堂的简明版本，并通过我们的密歇根大学出版社丛书《医学和社会对话》出版。

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.