There is almost no systematic, empirical research on the topic of how information about genetic risk information travels through families, what family and cultural characteristics might impede or promote its dissemination, and how individuals at genetic risk conceptualize these issues. The purpose of this project is to explore these issues using risk information about breast and ovarian cancer as a model.

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?

The specific aims of this study are to: confirm and extend previous work on the prevalence and nature of data sharing and withholding in academic genetics and its subfields; investigate the factors associated with data sharing and withholding in academic genetics and its subfields; and investigate the effects of university and governmental policies on data sharing and withholding in academic genetics and its subfields.

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.

Although scholars have offered valuable policy recommendations, lawmakers lack a source of comprehensive, clear, and unbiased research concerning the ethical, technical, and legal issues that influence genetics legislation. This project is intended to provide legislators with objective and comprehensive information from a nonpartisan source so they can draft genetics-related legislation that accurately conveys the legislative intent; is clearly understood by lay people, scientists, and industry; and avoids unintended adverse effects.

This project will explore the breadth of current efforts to structure public health practice to respond to advances in genetics, analyzing these efforts for their consistency with existing public health law and policy and for their responsiveness to the lessons of history. The roles of public health institutions in reproductive genetic testing, state-run newborn screening programs, and predictive genetic testing will receive particular emphasis.

The broad goal of the research proposal is to identify factors that either promote or inhibit the development, by scientists, of new genetic technologies relevant to health care and to consider the research policy implications of individual and organizational factors. The specific aim is to elicit the views of individual research scientists on appropriate transfer of genetic technologies into health care practice.

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 purpose of this study is to determine how the prospect of direct benefit to research subjects in gene transfer research (GTR) (usually called 'gene therapy') is understood and discussed by research subjects, investigators, study coordinators, and IRBs, and explained in consent forms.