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.

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.

In 1987 the Education Division of the Foundation for Blood Research developed, field tested, and distributed a human genetics curriculum unit for high school biology classes. The unit, titled 'Chances' Choices', is a free-standing interactive unit currently being used on an ongoing basis by at least 280 biology teachers and 15,000 students (annually) throughout the country. This project, in response to rapid advances in the field of human genetics, will revise, update and add to 'Chances' Choices'.

The overall goals of this project are to develop relevant, evidence-based clinical practice guidelines for genetic testing for BRCA1/2 through a consensus process involving community care practitioners and oncologists, and to evaluate the effect of the guidelines on clinical practice. The project will convene a Guidelines Group. Educational materials will be developed based on the guidelines, to aid clinicians in pedigree assessment, interpretation of the risks and benefits of BRCA1/2 testing, and use of cancer surveillance or other individuals with increased cancer risk.

This project will investigate the nature of disability to articulate, for public policy, the purposes for which emerging testing capabilities ought ethically to be used. To analyze the nature of disability, the project participants--including experts from disability studies, medical geneticists, genetic counselors, philosophers, and others--will examine two distinctions that are not well addressed in the literature: the distinction between nondisease and disease traits, and the distinction between medical and social disabilities.

The broad, long-term objectives of this proposal are to develop Genline, an electronic clinical genetics knowledge base, to assist health professionals in using the scientific advances of The Human Genome Project for the care of patients with inherited diseases. The Specific Aims are:
-to develop a knowledge base of authoritative, concise, up-to-date information relating new genetic tests to the diagnosis, management and counseling of families with genetic diseases;

This program will develop a model project, aimed at increasing the likelihood that persons affected by genetic conditions receive quality family-centered and culturally sensitive medical care.

Stigma and discrimination are recognized as potentially important social consequences of advances in genetic information. This broadly conceived study of stigma will focus on public attitudes, behavioral intentions and policy orientations. Specifically, the study will examine the impact of perceived genetic etiology on orientations toward individuals and families affected by mental illnesses.

The overall aim of this ethnographic and longitudinal project is to assess how parents from different cultural backgrounds who have a child or who are at risk for having a child with a genetic disorder seek out, understand, and use knowledge (including information received during genetic counseling and evaluation) to interpret genetic disorders and their experiences, and to make decisions about reproduction, health, and services.

The proposed project will determine the factors with which people distinguish genetic from non-genetic disease, and the factors that they bring to bear in interpreting genetic diseases or conditions. The project will identify the ways in which these factors might vary between the following three contrastive pairs:

- people who are members of racial or ethnic groups that historically have been subjected to stigmatization, versus those who are not;

- scientists who conduct this research, and the lay public who it may concern; and