The purpose of this project is to support a coordinated and wide-ranging research project focusing on the legal and ethical issues raised by the human genome project. The nation's leading experts in the fields of genetics, law and ethics will be assembled to study the long-term legal and ethical implications of the genome project. Each expert will be assigned a topic and asked to produce a manuscript identifying the emerging issues and discussing legislative priorities and possible solutions.
This project utilizes a method of ethical analysis described as 'paradigm analysis' to develop a comprehensive and systematic framework for ethical issues raised by genomic information in clinical genetics. Several diseases with genetic bases will be used to group specific sets of ethical issues and a method for ethical analysis will be devised.
The long term objectives of this project are to develop an integrated package of public and professional education materials that would meet the pre-screening needs for education and informed consent of the public, and for the professional offering the testing. The materials would utilize innovative technology such as interactive computers, and would be developed for the average reader.
The purpose of this project is to develop models for broad-based community dialogue to examine the value and ethical dimensions of emerging technologies in applied human genetics. The project will be carried out by a multidisciplinary and multi-institutional team with expertise in ethics, science policy, and education. The Center for Applied and Professional Ethics at the University of Tennessee, joins with an unusually science-literate congregation to develop this project.
This project will provide an overview of the impact of the HGP on access to health care. In addition to scholarly articles, the product of this research will be a book on the HGP and access to health care, which will address the HGP's impact on health care needs, the likely availability of resources, and our concepts of health, illness, and personal responsibility for health and illness. The project will also examine the impact of the HGP on the health care enterprise in the US, focusing on access, and how decisions about financing may be affected.
This project will focus on individuals and families receiving care from a health maintenance organization. The assessment of the ethical and policy issues in CF screening seeks to determine the level of interest in learning more about CF, and factors that distinguish those who are interested in participating in a CF education program from those who are not.
Using historical methods, this project explores the relevance of eugenics to genomics for the specific case of cancer theory and policy. The project will first examine the history of eugenics to see how genetic information was used in the 1920's-1940's to stigmatize or discriminate against specific individuals or members of groups. A second part examines the history of recent cancer theory to determine the extent to which evidence has been found that cancer is genetic, in the various senses of that term.