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.
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 purpose of this project is to develop and test a CDROM on ethical aspects of genetic testing for practicing registered nurses and senior level professional nursing students. Comprised of modules on ethics, genetic testing, and case studies on breast cancer and Alzheimer disease, the CDROM will provide for individually paced, interactive learning. Content will be critiqued by members of professional nursing organizations who participate in genetic testing.
The general aim of the project is to research and develop instructional material on business ethics decision making for those involved in commercializing biotechnology and genomics products. There are four specific aims.
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 purpose of this study is to explore the interplay of parents' beliefs and behaviors in order to identify information management styles used by families in which there is a child with a genetic condition. In addition, the role that health care professionals play in helping families manage genetic information will be explored.
The Fred Friendly Seminars are producing a television series, entitled Our Genes/Our Choices, as the centerpiece of a vigorous public communication and education effort designed to engage the American public as well as professional and policy-making constituencies in a critically needed dialogue about the ethical, legal, medical and social implications of advances in genetic technology. This project will create extensive resources and activities for students, educators, policy makers, and professionals in science, medicine, law, business, and religion.
This project will develop video based educational materials to inform new parents about implications of DNA testing for disorders evaluated in the newborn screen, using Cystic Fibrosis (CF) Newborn Screening as a model. The investigators will optimize the impact of the video content based on focus group and post-video evaluation feedback.
The purpose of this project is to produce several professional articles that identify and analyze the ethical, legal, and social issues that surround screening and altering human embryos, thus helping society and relevant decision-makers come to grips with these issues. Year 1 of the project will focus on embryo screening as a form of negative genetic selection, and its use in screening embryos for transfer based on reasons other than avoidance of severe genetic disease, i.e., for susceptibility mutations, for HLA matching, for gender, and for non-medical traits.
New screening technologies and new knowledge about the origin and treatment of genetic conditions are changing the genetic screening environment. This project will focus on the impact of these changes on newborn screening, an on-going public health program that tests virtually all newborns for genetic disorders. The long-term objective is to provide guidance to the professionals, policymakers, and members of the public who must make decisions about newborn screening in this new environment. The specific aims are:1.