This study employs a critical content analytic approach to ascertain the degree of perfectionist, essentialist and discriminatory social norms associated with the rise in public discourse about genetic medicine. It employs a coding protocol with demonstrated intercoder reliability. Using this protocol, coders will be able to produce a quantitative survey of a structured random sample of congressional discourse, newspapers, popular magazines, and television coverage from 1950 to 1995.

This study will (a) describe the medical, genetic, and carrier knowledge and beliefs in a population of female relatives of individuals with severe type A hemophilia before and after the relatives accept or decline direct mutation carrier testing; (b) identify the percent of these women who accept the offer of free pre test counseling, testing, and follow up genetic counseling and note their choice of one of three formats for pre test counseling - individually, with a spouse/partner, or in a group; and (c) describe their one and six months reactions to knowledge of personal carrier status a

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.

This prospective, longitudinal study will examine decision-making about pre-surgery BRCA1/2 testing and the medical, psychosocial, and economic outcomes of testing among newly-diagnosed breast cancer patients who are at high risk for having a BRCA1/2 mutation. The theoretical framework for this investigation is derived from Expected Utility Theory.

This study (N=300) of women at high familial risk for breast and ovarian cancer aims to develop and assess a core intervention, based on state-of-the-art theory and research, to facilitate well-informed decisions for BRCA1/2 testing. In this procedure the genetic cancer testing candidate is helped to cognitively and emotionally anticipate scenarios about alternative potential outcomes of testing outlined in the informed consent process.

This study will explore the process by which families at increased risk of adult-onset disease decide to involve their children in research on genetic susceptibility. Through interviews with parents at increased risk for heart disease and breast cancer, their children between the ages of 10 and 17, and the physicians they identify as influential, this study will explore perceptions about the motivations and barriers to participation of children in research on genetic susceptibility to these two diseases.

This study will develop and validate (1) alternative methods for administering informed consent (IC) procedures to a diverse population of women at increased risk for breast cancer, and 2) standardized instruments to evaluate the effect of alternative methods on both comprehension and willingness to participate in research that includes screening for BRCA1/2 mutations. The study focuses on the 'informed' part of informed consent and reflects the principles and methods of cognitive-based theories of decision making and risk communication.

This project is designed to examine factors associated with the uptake of BRCA1/2 genetic testing and patients' medical management choices after learning their test results. The project will study patients' actual testing and medical management decisions in clinical practice and will examine the role of practitioner attitudes in those decisions. Data will be collected through interviews with patients who are offered BRCA1/2 testing, and through questionnaires to their practitioners.