The purpose of this project is to address the professional dilemmas of nurses related to genetic information about patients and their families. Continuing education in genetics is not widely available for nurses, and there is currently no credentialing process for advanced levels of nursing practice in genetics.
The Secret of Life is a series of eight, 60-minute programs for PBS broadcast with extensive educational and outreach materials. The goal of the program is to make molecular biology intelligible to the audience, to demonstrate the extent to which it has transformed the biological and medical sciences, and to explore the pressing issues it raises. The materials will debunk tabloid images of laboratory-created monsters and headlines of miracle cancer cures, and bring subjects to life through tales of discovery, personal case studies, and engaging histories.
Educational objectives of the Human Genome Mapping Center at Stanford University will be achieved by an educational outreach program designed to provide the public with a basic, working understanding of the science behind, applications of, and ethical issues raised by the HGP. The first aim is to develop and present in high school classrooms a curriculum consisting of lab experiments and dry-lab exercises using three-dimensional models.
The National Information Resource on Ethics & Human Genetics (NIREHG), in cooperation with the National Reference Center for Bioethics Literature (NRCBL, funded by a contract with the National Library of Medicine and other sources) and with the consultation of an Advisory Board of subject matter experts, proposes:
- To continue the identification, collection, and cataloging of materials on the ethical, legal, and social implications (ELSI) of genetic research;
This project will continue the activity of the National Information Resource on Ethics and Human Genetics at the Kennedy Institute of Ethics, Georgetown University. The research group will continue to gather, catalog, index, and disseminate information on the ethical, legal, and social issues raised by the human genome project and its applications in human genetics. The materials collected by the research group will be housed at the National Reference Center for Bioethics Literature.
This project will continue the activity of the National Information Resource on Ethics and Human Genetics at the Kennedy Institute of Ethics, Georgetown University. The research group will:
The purpose of this project is to contribute empirical data concerning the values, beliefs, and experiences of persons (or family members of persons) with genetic conditions regarding informational privacy and access to health insurance in the context of health care reform. These data then will be analyzed for their normative and legal implications for public policy. Using a cross-sectional design, data will be obtained by personal interviews with 450 persons affected by genetic conditions or their family members.
This project will develop, produce, disseminate and evaluate a one-hour educational videotape for primary care clinicians (physicians, nurses, others) on the clinically relevant science and counseling skills needed to provide accurate and sensitive clinical genetic services.
This is a comparative anthropological analysis of the social networks associated with three groups of heritable connective tissue disorders: 1) Marfan syndrome, epidermolysis bullosa and chondrodysplasias. Using participant observation and interviews, the study will investigate the production and circulation of genetic knowledge among three interrelated constituencies: 1) laboratory researchers; 2) clinicians; and 3) lay support groups. The project aims to identify and describe institutions, events, and practices that facilitate or impede knowledge transfer among members of these groups.
About a dozen states have enacted laws restricting health insurers' use of genetic test information, and a new federal law declares that asymptomatic genetic predisposition to illness does not constitute a pre-existing condition. This project will evaluate the effects of these laws in 6 states using a qualitative, comparative, case study methodology. Three states with laws restricting insurers' use of genetic information will be matched with 3 comparable states that lack these laws.