A survey study of the attitudes and experiences of adults with intellectual disability regarding participation in research.

BACKGROUND: Historically, people with intellectual disability have been exploited in and excluded from scientific research. To facilitate greater representation of adults with intellectual disability as research respondents, we sought to understand their interest in research participation and factors affecting their willingness to volunteer to participate, such as the core value of trust. METHODS: Our survey measured attitudes of adults with intellectual disability towards research in general and research specifically involving adults with intellectual disability as respondents, as well as their prior research experiences, trust of researchers and interest in future research participation. RESULTS: Participants reported positive attitudes towards research and strong interest in future participation opportunities, and trust of researchers was positively correlated to both. The belief that 'research about adults with intellectual disability is very important' also predicted participants' interest in future research participation. CONCLUSIONS: Our findings indicate that adults with intellectual disability support the direct involvement of adults with intellectual disability in research as respondents. Trustworthy rapport with researchers and positive views about research foster greater inclusion of this population.

It's ethical, but is it legal? Teaching ethics and law in the medical school curriculum.

While Western medical ethics has ancient roots in the teachings of Hippocrates, its standing in the undergraduate medical curriculum is a distinctly modern development. Today, all of the 127 accredited U.S. medical schools offer formal biomedical ethics instruction, and nearly all offer instruction in the related discipline of health law. This article describes how biomedical ethics and health law are taught at the University of Iowa College of Medicine, one of 12 medical schools that offers separate required courses in both ethics and law. Often ethics and law overlap; often, to act ethically is to act legally. But medical students and practicing physicians also regularly confront dilemmas that pose the question, "It's ethical, but is it legal?" This article discusses the goals, methods, and core themes of teaching issues at the intersection of medicine, ethics, and law, and how the approach to this instruction is designed to offer students a tool kit to begin to deal effectively with these complex issues in professional life. Anat Rec (New Anat) 265:5-9, 2001.

Disclosing genetic information to family members. Do old paradigms fit the new medicine?

Launched in 1990, the Human Genome Project (HGP), an ambitious, international, federally funded project to map and sequence all human genes, has rapidly expanded our genetic knowledge. Not only does the HGP promise to arm physicians with impressive diagnostic tools, its ultimate target is radical improvement in therapeutic and preventive interventions in a new era of genetic medicine. At the same time, however, the genetic revolution poses momentous ethical, legal, and social questions. During the past decade, a substantial--and unresolved--discourse has emerged about such matters as genetic privacy, genetic discrimination, research with stored tissue samples, ownership of genetic material and information, gene patenting, and the genomic challenge to time-honored concepts of health and disease.

Malpractice claims against family physicians are the best doctors sued more?

BACKGROUND: Physicians who have been sued multiple times for malpractice are assumed to be less competent than those who have never been sued. However, there is a lack of data to support this assumption. Competence includes both knowledge and performance, and there are theoretical reasons to suspect that the most knowledgeable physicians may be sued the most. METHODS: We conducted a retrospective cohort study of family physicians who were included in the Florida section of the 1996 American Medical Association's Physician Masterfile and who practiced in Florida at any time between 1971 and 1994 (N = 3686). The main outcome was the number of malpractice claims per physician adjusted for time in practice. Using regression methods, we analyzed associations between malpractice claims and measures of physician knowledge. RESULTS: Risk factors for malpractice claims included graduation from a medical school in the United States or Canada (incidence rate ratio [IRR] 1.8; 95% confidence interval [CI], 1.6-2.1), specialty board certification (IRR 1.8; 95% CI, 1.6-2.1), holding the American Medical Association Physician's Recognition Award (IRR 1.4; 95% CI, 1.2-1.7), and Alpha Omega Alpha Honor Society membership (IRR 1.8; 95% CI, 1.1-3.0). Among board-certified family physicians, sued physicians who made no payments to a plaintiff had higher certification examination scores than nonsued physicians (53.48 vs 51.38, P < .01). The scores of sued physicians who made payments were similar to those of nonsued physicians (51.05 vs 51.38, P = .93). CONCLUSIONS: Among Florida family physicians, the frequency of malpractice claims increased with evidence of greater medical knowledge.

Health care reform and the right to health care.

Where is the right to health care in the national debate? The Clinton health care plan would translate moral commitment to equitable access to a decent minimum of health care into a legal right to health care. This article reviews health care reform from the perspective of a right to health care.

Brain death, religious freedom, and public policy: New Jersey's landmark legislative initiative.

"Whole brain death" (neurological death) is well-established as a legal standard of death across the country. Recently, New Jersey became the first state to enact a statute recognizing a personal religious exemption (a conscience clause) protecting the rights of those who object to neurological death. The Act also mandates adoption through the regulatory process of uniform and up-to-date clinical criteria for determining neurological death.