Responsible inclusion: A systematic review of consent to social-behavioral research with adults with intellectual disability in the US.

Background: In recognition of their status as a health disparities population, there is growing emphasis on conducting research inclusive of adults with intellectual disability to generate new knowledge and opportunities to improve health and equity. Yet they are often excluded from research, and human research participant protection experts and researchers lack agreement on effective consent protocols for their inclusion.

Objective: We sought to identify approaches to consent in US-based social-behavioral research with adults with intellectual disability.

When Adolescents Disagree with Their Vaccine-Hesitant Parents about COVID-19 Vaccination.

AbstractAs we journey into the fourth year of the COVID-19 pandemic, a majority of Americans express relief at a "return to normal," experience pandemic fatigue, or embrace the idea of living with COVID-19 in much the same way we live with the seasonal flu. But transition to a new phase of life with SARS-CoV-2 does not diminish the importance of vaccination. The US Centers for Disease Control and the Food and Drug Administration recently recommended another round of booster dose for persons age 5 and up, or an initial series for those not previously vaccinated, with an updated bivalent formula that protects against both the original virus strain and Omicron subvariants that are now the dominant source of infection.

Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement.

Background: Adults with intellectual disability experience disparities in social determinants of health and health outcomes. While new knowledge can advance health equity, adults with intellectual disability are frequently excluded from being direct respondents in research. Their inclusion requires addressing scientific and ethical challenges that contribute to their exclusion.

Should a Teenager Be Allowed to Leave the Hospital AMA to Attend His Father's Funeral?

What should physicians do when an adolescent wishes to risk his physical health and leave the hospital to attend the funeral of his late father? What if the young man's mother, and only remaining guardian, both supports and encourages such a decision? In this discussion, we examine the legality, morality, and safety of discharging a minor under such conditions.

A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

Background: Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community.

Objective/hypothesis: We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members.

What's the Harm? Harms in Research With Adults With Intellectual Disability.

Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members.

Is It Worth It? Benefits in Research With Adults With Intellectual Disability.

Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and institutional review board members.

Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.

Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public's views on appropriate safeguards for this population.

"You can't be cold and scientific": community views on ethical issues in intellectual disability research.

Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability.

Defining features of advance directives in law and clinical practice.

In the > 30 years since the New Jersey Supreme Court's seminal opinion in the case of Karen Ann Quinlan, all 50 states and the District of Columbia have enacted legislation to recognize the legal right of competent adults to write advance directives. The purpose of advance directives is to provide direction for health-care decisions near the end of life, when the ravages of illness, disease, or injury have taken the ability to decide for one's self. This article reviews the defining features of advance directives and the governing law, discusses some common practical concerns regarding the use and effectiveness of advance directives, and identifies several significant ethical-legal challenges for honoring advance directives at the bedside.

Malpractice liability for informal consultations.

Background: Informal ("curbside") consults are widely used by primary care physicians. These interactions occur in person, by telephone, or even by e-mail. Exposure to malpractice liability is a frequent concern of subspecialty physicians and influences their willingness to engage in this activity.