Multiple elements contribute to the successful translation of genetic advances into improved health outcomes. This project will address these elements through analysis of a series of genetic testing case examples.
This R25 application will develop, evaluate, and implement an Internet-based education program specifically written to teach medical students about ELSI issues related to genetics, especially genetic testing and counseling. It will create a module of six lessons that will be available on the Internet for medical students to take at the request of a course director. Each lesson will utilize a clinical-case scenario approach and will include straightforward clinical scenarios involving patients and genetic ELSI issues.
The primary goal of this pilot project is to examine the relationship between BRCA1 genetic counseling communication patterns and cancer-related health behaviors and psychosocial adjustment of an ethnically and culturally diverse sample. Audio-taped genetic counseling sessions of a Utah-based Caucasian kindred (K2082) and a large African American kindred (K2099) will be analyzed using a widely used provider-patient communication analysis system, Roter Interaction Analysis System (RIAS) adapted for this study.
The proposed research will study whether there should be any limits placed on life insurers' use of predictive genetic information in risk classification or medical underwriting. The research will focus on the following issues:
- the current state of the science on the use of predictive genetic information in mortality risk calculations;
- the statutory and case law addressing actuarial fairness in life insurance;
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.
The genes conferring increased susceptibility to breast and ovarian cancer, BRCA1 and BRACA2, were identified in the mid-1990's and commercial testing became available soon thereafter. Intensive evaluation of women undergoing testing for BRCA1/2 germline mutations has been conducted, and has demonstrated that women participating in genetic testing through highly structured and supportive programs conducted largely at academic institutions have generally done well through the process and in the long term (1-5).
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 objective of this proposed historical and analytical study is to identify the major ethical concerns of Evangelical ('Born Again') Protestant Christians in the United States relative to genetic research and the Human Genome Project during the time period 1956 to the present.
The proposed project will support an educational program in genetics for faculty of audiology training programs and audiologists from early hearing detection and intervention programs with the goal of improving training of future audiologists in the clinical, technical, ethical, social and legal issues surrounding the provision of genetic services and molecular testing for hereditary types of hearing loss.
The increasing availability of genetic information on individuals raises a series of critical questions concerning privacy and confidentiality that have not been fully explored. The rise of computers, the Internet, and managed care all threaten the privacy of individuals' health information; and the sequencing of the human genome makes these issues particularly acute. Sharing genetic information may lead to stigma, discrimination, and threats to jobs and life and health insurance.