This R25 application will develop, evaluate, and implement an Internet-based education program specifically written to teach medical students about ELSI issues related to genetics, especially genetic testing and counseling. It will create a module of six lessons that will be available on the Internet for medical students to take at the request of a course director. Each lesson will utilize a clinical-case scenario approach and will include straightforward clinical scenarios involving patients and genetic ELSI issues.
The proposed research seeks to analyze arguments in the literature of philosophy, theology and public policy that take the genome in its integrity, contingency, or historical authenticity to be what ground humanity as natural or as part of nature. According to this view, insofar as human beings deliberately alter or control the human genome, they alienate themselves from their evolutionary history and from the natural world. The idea is, in effect, that humanity remains a part of nature as long as nature - in the form of non-manipulated genome - remains part of humanity.
The proposed research will study whether there should be any limits placed on life insurers' use of predictive genetic information in risk classification or medical underwriting. The research will focus on the following issues:
- the current state of the science on the use of predictive genetic information in mortality risk calculations;
- the statutory and case law addressing actuarial fairness in life insurance;
The Fred Friendly Seminars are producing a television series, entitled Our Genes/Our Choices, as the centerpiece of a vigorous public communication and education effort designed to engage the American public as well as professional and policy-making constituencies in a critically needed dialogue about the ethical, legal, medical and social implications of advances in genetic technology. This project will create extensive resources and activities for students, educators, policy makers, and professionals in science, medicine, law, business, and religion.
The increasing availability of genetic information on individuals raises a series of critical questions concerning privacy and confidentiality that have not been fully explored. The rise of computers, the Internet, and managed care all threaten the privacy of individuals' health information; and the sequencing of the human genome makes these issues particularly acute. Sharing genetic information may lead to stigma, discrimination, and threats to jobs and life and health insurance.
Developments in transgenic animal research, together with the limited success of gene transfers targeting human somatic cells, have triggered renewed interest in research on germ line interventions in humans. Debates over modifying the human germ line tend to focus on the long-term consequences to society. Comparatively little attention is paid to the human research that will be necessary to establish that genetic interventions are safe and effective. The aim of this project is to apply U.S.
Patient groups are becoming more active in promoting and facilitating pre-clinical and clinical research. While patient groups have long played a key role in participating in research, various groups have or are starting foundations for funding research, compiling disease-specific patient registries and genealogical and medical databases, and establishing tissue and DNA banks to provide resources crucial for genetics research. Individuals involved in these initiatives and their families often participate directly in research.
New screening technologies and new knowledge about the origin and treatment of genetic conditions are changing the genetic screening environment. This project will focus on the impact of these changes on newborn screening, an on-going public health program that tests virtually all newborns for genetic disorders. The long-term objective is to provide guidance to the professionals, policymakers, and members of the public who must make decisions about newborn screening in this new environment. The specific aims are:1.
This project is designed to promote public understanding of the social, ethical and legal implications of research on genetic susceptibility to environmental toxicants. In recognition of the potential impact of genetic science developments in the 21st century, the investigators propose a broad partnership of schools, unions and workers, scientists, and minority communities to develop a forum to share views on socio-ethical issues related to gene-environmental research and to educate all parties on these views.
This project will combine empirical investigation with ethical and policy analysis, employing a range of methods: systematic review of the scientific literature and of tobacco industry documents, interviews with stakeholders, ethnographic research at scientific meetings, and a multi-disciplinary, national Advisory Board.