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 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.
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 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.
This project is an Information Conference for Minorities on the Human Genome Project: The Challenges and Impact of Human Genome Research for Minority Communities. The two-day conference is designed primarily for representatives from the minority communities (African Americans, Hispanics, Asian Americans, Native Americans), but will be open to all interested persons.
The goal of this project is to collect cell samples from 40 trios of Mexican-American background for NHGRIs HapMap project, with cells being deposited at the Coriell Institute for Medical Research. This will be done after extensive community consultation and engagement. This effort builds on our recent experience in developing community consultation and sample collection in the same population for the NIGMS Human Genetic Cell Repository at the Coriell Institute.
Hispanics are the most rapidly growing ethnic group in the U.S. There are 35 million Hispanics in the U.S., including 20 million Mexican- Americans. This represents 12.5% and 7.3% of the total U.S. population, respectively (Census 2000). The long-term objective of this proposal is to develop future educational programs in genetics for U.S. Hispanics, particularly those of Mexican descent. In order to prepare for that long-term goal, two specific aims will be addressed in this application: (l) To survey the educational needs of Hispanics/Mexican-Americans in the area of genetics.
The goal of this revised proposal is to illuminate the relationships between genetic researchers and racial/ethnic groups. Specifically, it seeks to understand how and why investigators link genetic diseases to named populations; how community organizations respond to genetic research and disease linkages; and to stimulate a dialogue between genetic researchers and community organizations on social risk, community consultation and informed consent.
One of the primary motivations for parents to participate in BRCAI/2 testing is to find out about their minor children's risk of developing cancer. However, parents often report feeling distressed and conflicted about sharing this information with their youngsters once it is available. As few parents receive professional guidance in evaluating the potential risks and benefits of disclosure to children, parents may be prone to make ineffective decisions about communication that could lead to adverse psychosocial outcomes.