This project is focused on the ways in which two diagnostic technologies--screening mammography and genetic testing--emerged, diffused, interacted with medical and social thought and values, and provoked controversy. The central research questions are: What are the factors that have led to the dramatic shift in beliefs about, and practices surrounding, breast cancer risk over the past fifty years? What have been the consequences?

CRIP III is a self-administered mailed survey of 1500 cancer risk information providers (CRIPs). The questionnaire was developed from the results of the telephone interview guide (P-TIG) of CRIP Phase II and is designed to assess the knowledge, attitudes, behaviors, practices and perceptions (KABPP) of more formally recognized CRIP. The sample will include all CRIP identified (but not necessarily interviewed( in CRIP Phase II (n=250, U.S.; n=250, Canada). A similar CRIP group in the U.K. (N-125) and New Zealand/Australia (n=125) will also be included.

The investigators plan to develop an information base on how the public, particularly those at increased risk, comprehend the current information regarding inheritance of Alzheimer's Disease (AD) risk, understand the role of competing risk factors, and view such testing. In addition physician understanding and interest in genetic testing for AD will be studied. Specific aims also include comparison of respondent and physician expectations of the testing process. The investigators rely on survey methodology using previously tested lines of questioning.

This study will examine the significance accorded to disability in judgements about quality and value of human lives, focusing on two domains in which such judgments are of central importance prenatal testing by prospective parents, and the use of disability-adjusted life years (DALYs) to determine the cost-effectiveness of health care interventions. To address these issues, the investigators will convene an interdisciplinary working group of researchers with backgrounds in philosophy, law, genetics, counseling, public health, economics, and social science. The group will

The long term goal of this project is to improve patient understanding about breast cancer risk and genetic testing. This project will conduct a clinical trial to evaluate the effectiveness of a CD-ROM, called 'Counseling by Computer: Breast Cancer Risk and Genetic Testing', at educating women about breast cancer risk, and options and implications of genetic testing.

This project addresses the ethical, legal, and social implications of Alzheimer's disease (AD) genetics from the critical perspective of a group at high risk for the disease: currently unaffected relatives in families with AD. The applicants--Mass General Hospital/Harvard Medical School and the University of Alabama--have been working together since 1990 as part of the NIMH Genetics Initiative to identify families with Alzheimer's disease for genetic linkage study.

Genes and other biological markers are rapidly being identified that can provide presymptomatic estimates of risk for the eventual development of late-onset diseases. There is widespread public interest in obtaining risk information, particularly as treatments are developed to slow or prevent the onset of degenerative diseases. Many of the recently discovered gene markers are not deterministic genes, but rather susceptibility genes that interact with other, as yet unidentified genes, and with factors such as age, gender, race, family history and environmental exposures.

This research project proposes to determine who actually chooses to obtain susceptibility genotyping for Alzheimer's disease (AD) and what the consequences of that information would be. Subjects will be randomized to one of two arms of study. In the Control arm, risk will be estimated based upon family history. In the Intervention arm, risk will be estimated by family history and by genotyping APOE, a common susceptibility polymorphism.

Patients with serious disease who are potential research subjects are routinely described as "vulnerable"and as disproportionately anticipating direct benefit from participation in early-phase trials. In our 1999-2003 ELSI project, "The Social Construction of Benefit in Gene Transfer Research", we explored how benefit in gene transfer research (GTR) is discussed and understood, and whether and how the "therapeutic misconception" exists in GTR.

This project is a collaborative effort of faculty from the Mount Sinai School of Medicine in the Departments of Human Genetics, Medical Education, the Morchand Center for Clinical Competence, Internal Medicine, Pediatrics, and Obstetrics and Gynecology. It is designed to evaluate the effectiveness of the use of Standardized Patients (SP) in resident education about the appropriate uses and issues associated with genetic testing, and to provide residents with training in genetic history taking and pedigree analysis.