The primary objective of this study, first begun in 1999, is to compare newborn identification by expanded screening to clinical identification in children with biochemical genetic disorders in terms of the health and development of affected children and psychosocial consequences for families. The study also assesses the impact of a false positive screen compared to a normal screen in terms of parental response and interactions with the healthcare system.
The purpose of this project is to estimate the likely effects of testing for BRCA1 and BRCA2 mutations on the cost and price of life insurance contracts, under conditions where insurance companies do not have access to women's genetic test results. Contemporary debates about this issue pit women's legitimate interests in privacy against insurers' legitimate interests in financial solvency.
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
The University of Iowa College of Nursing and the Midwest Nursing Research Society (MNRS) will hold a 2 1/2 day conference ' Midwest Genetic Nursing Research: Advancing Science Through Collaboration' to be held from Oct. 13-15, 2000, at the College of Nursing in Iowa City, IA. The specific goals of the 2 1/2 day conference are to:
- present state of the science information in genetic discoveries and the related ethical, legal, and social issues impacting human health and nursing practice,
The University of Minnesota Center for Bioethics and the University's Joint Degree Program in Law, Health &the Life Sciences will complete a comprehensive investigation of the ethical, legal, and policy issues in the use of genetic information in private and public disability insurance and to recommend policies based on our findings. To achieve the goals for this project, the investigators will convene an interdisciplinary working group comprised of some of the best U.S.
The objective of the proposed research is to identify the nature and extent of the clergy's role in genetics counseling as understood by genetic counselors and other healthcare professionals.
This project will use case studies and a survey, combining qualitative and quantitative approaches, to describe and analyze the effects of a particular class of patents (those that claim DNA sequences for use as a genetic test). The investigators will examine the effects on 1) provision of DNA-based genetic testing services, and 2) research and development of other genetic tests or therapies based on disease-gene associations at academic and commercial institutions.
This ethnographic study examines the social and ethical implications of the use of categories of race and ethnicity in human genome research.
This project proposes to address a critical gap in the literature regarding cancer susceptibility testing by examining utilization of genetic counseling and testing, and behavioral and psychosocial responses to the receipt of genetic information among a large, extended African American kindred (K2099) linked to a specific BRCA1 mutation. A prospective study of approximately 150 members of K2099 and their spouses/partners will be performed over a four year period. Genetic education and counseling will be provided when testing is offered and at the results session.
To advance understanding of the ethical dimensions of genetic research for diverse populations this project will address questions that take into account concerns of the individual, scientific institutions, and the broader community. Informed consent provides the focus of the ethical exchange between investigators and study participants. This social interaction will serve as the context for exploring ethical issues associated with the implementation of collaborative international genetic research.