Access to transplantation for persons with intellectual disability: Strategies for nondiscrimination.

Disqualifying patients with intellectual disabilities (ID) from transplantation has received growing attention from the media, state legislatures, the Office of Civil Rights, and recently the National Council on Disability, as well as internationally. Compared with evidence-based criteria used to determine transplant eligibility, the ID criterion remains controversial because of its potential to be discriminatory, subjective, and because its relationship to outcomes is uncertain. Use of ID in determining transplant candidacy may stem partly from perceived worse adherence and outcomes for patients with ID, fear of penalties to transplant centers for poor outcomes, and stigma surrounding the quality of life for people with ID. However, using ID as a contraindication to solid organ transplantation is not evidence-based and reduces equitable access to transplantation, disadvantaging an already vulnerable population. Variability and lack of transparency in referral and evaluation allows for gatekeeping, threatens patient autonomy, limits access to lifesaving treatment, and may be seen as unfair. We examine the benefits and harms of using ID as a transplant eligibility criterion, review current clinical evidence and ethical considerations, and make recommendations for transplant teams and regulatory agencies to ensure fair access to transplant for individuals with ID.

Ethics of health research in communities: perspectives from the southwestern United States.

PURPOSE: The increasing attention paid to community-based research highlights the question of whether human research protections focused on the individual are adequate to safeguard communities. We conducted a study to explore how community members perceive low-risk health research, the adequacy of human research protection processes, and the ethical conduct of community-based research. METHODS: Eighteen focus groups were conducted among rural and urban Hispanic and Native American communities in New Mexico using a semistructured guide. Group transcriptions were analyzed using iterative readings and coding, with review of the analytic summary by group members. RESULTS: Although participants recognized the value of health research, many also identified several adverse effects of research in their communities, including social (community and individual labeling, stigmatization, and discrimination) and economic (community job losses, increased insurance rates, and loss of community income). A lack of community beneficence was emphasized by participants who spoke of researchers who fail to communicate results adequately or assist with follow-through. Many group members did not believe current human research and data privacy processes were adequate to protect or assist communities. CONCLUSIONS: Ethical review of community-based health research should apply the Belmont principles to communities. Researchers should adopt additional approaches to community-based research by engaging communities as active partners throughout the research process, focusing on community priorities, and taking extra precautions to assure individual and community privacy. Plans for meaningful dissemination of results to communities should be part of the research design.

Trends in perinatal and infant health disparities between rural American Indians and Alaska natives and rural Whites.

OBJECTIVES: We examined disparities in perinatal care, birth outcomes, and infant health between rural American Indian and Alaska Native (AIAN) persons and rural Whites over time. METHODS: We compared perinatal and infant health measures for 217 064 rural AIAN births and 5 032 533 rural non-Hispanic White births. RESULTS: Among American Indians and Alaska Natives, unadjusted rates of inadequate prenatal care (1985-1987, 36.3%; 1995-1997, 26.3%) and postneonatal death (1985-1987, 7.1 per 1000; 1995-1997, 4.8 per 1000) improved significantly. However, disparities between American Indians and Alaska Natives and Whites in adjusted odds ratios (AORs) of postneonatal death (1985-1987, AOR = 1.55; 95% confidence interval [CI] = 1.41, 1.71; 1995-1997, AOR = 1.46; 95% CI = 1.31, 1.64) and adjusted risk ratios (ARRs) of inadequate prenatal care (1985-1987, ARR = 1.67; 95% CI = 1.65, 1.69; 1995-1997, ARR = 1.84; 95% CI = 1.81, 1.87) persisted. CONCLUSIONS: Despite significant decreases in inadequate prenatal care and postneonatal death among American Indians and Alaska Natives, additional measures are needed to close persistent health gaps for this group.

Perinatal and infant health among rural and urban American Indians/Alaska Natives.

OBJECTIVES: We sought to provide a national profile of rural and urban American Indian/Alaska Native (AI/AN) maternal and infant health. METHODS: In this cross-sectional study of all 1989-1991 singleton AI/AN births to US residents, we compared receipt of an inadequate pattern of prenatal care, low birthweight (< 2500 g), infant mortality, and cause of death for US rural and urban AI/AN and non-AI/AN populations. RESULTS: Receipt of an inadequate pattern of prenatal care was significantly higher for rural than for urban mothers of AI/AN infants (18.1% vs 14.4%, P