This project is a collaborative effort of faculty from the Mount Sinai School of Medicine in the Departments of Human Genetics, Medical Education, Community and Preventive Medicine, and The Morchand Center for Clinical Competence.
The overall objective of the proposed research is to study the ethical, legal, and social implications of drug responsive genetic variations, especially where significant differences have been found based upon race, ethnicity, and gender. The research will focus on four elements:
The goal of this project is to explore the range of ethical, legal, and social implications of genetic research and health services with Indian and Native peoples. These issues have proven to be intensely controversial in some quarters and the intent in this proposal is to explore areas of common ground and possibility for compromise between Indian and Native communities and genetic researchers.
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 aims of this study are to:
- compare newborn identification of biochemical genetic disorders by expanded screening with clinical identification in term of the interaction between the parents and the health care system and elements of health outcome for the child and family and;
- assess the impact of false positive identification in expanded newborn screening in terms of parental response and interactions with the health care system.
The purpose of the proposed project is to deepen empirical understanding of reproductive genetic services in rural areas, through a comparative case study of genetic counseling, testing, and related services among rural and urban residents of Kentucky. The study explicitly seeks to describe and analyze regional variation in experiences and uses of reproductive genetic services as linked to intersections of place, culture, and policy ('routes of access'). The study will address the following specific, inter-related aims: 1.
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
In this study, the Education Development Center, Inc., in collaboration with the International Association of Cystic Fibrosis Adults (IACFA), Temple University, St.