Religious Exemptions, Public Health, and School Vaccination Requirements.

This Viewpoint examines 2 recent cases that encapsulate the debate on religious exemptions to school vaccination requirements and further argues against these exemptions for schoolchildren.

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. By most accounts most of the population has been or will become infected with SARS-CoV-2. Suboptimal uptake of the COVID-19 vaccines among the approximately 25 million adolescents in the United States is a significant obstacle to population coverage, public health, and the health and well-being of adolescents. A major cause of low adolescent uptake is parental vaccine hesitancy. This article discusses parental vaccine hesitancy and argues that permitting independent adolescent consent to COVID-19 vaccination should be an ethical and policy priority as we continue to confront the threat of Omicron and other variants of the coronavirus. We discuss the central role of the pediatric healthcare team in caring for adolescent patients who disagree with their parents about vaccination.

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. METHOD: We describe our multi-phased process, inclusive of community-engagement, to develop a self-report survey for adults with intellectual disability and share findings from an institutional ethnography conducted to identify strategies for facilitating inclusion. We also assessed indicators of the quality of these strategies. RESULTS: We identified building trust, showing respect, designing in accessibility, maximising flexibility and allowing individualised accommodations as strategies that foster inclusion. Multiple indicators validate the effectiveness of these strategies. CONCLUSIONS: Researchers can promote first-person decision-making and direct research participation by focusing on promoting accessibility, trust, respect and engagement.

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 Ethics Rounds 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. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views. METHODS: We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability. RESULTS: We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity. CONCLUSIONS: Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights.

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. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability.

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. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability.

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. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

"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. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety.

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. With a primary focus on the health-care proxy, the anatomy of advance directives is analyzed under four general rubrics: formal requirements, decisional capacity and when the directive takes effect, rights and responsibilities of proxies and health-care providers, and the scope and limitations of decisions to forego life-sustaining treatment. There is much common ground among state laws, but particular legal provisions may vary from state to state. Physicians, nurses, social workers, and other health-care professionals should be familiar with the law of their home state.

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. To assess this risk, we reviewed reported judicial opinions involving informal consultation by physicians. METHODS: A search of the existing medical literature, and of the Westlaw national database was undertaken to identify reported judicial opinions involving informal physician consults that address whether informal consultations create a legal relationship between consulting specialist physicians and patients that gives rise to a legal duty of care owed by the consulting specialist to the patient. CONCLUSIONS: Courts have consistently ruled that no physician-patient relationship exists between a consultant and the patient who is the focus of the informal consultation. In the absence of such a relationship, the courts have found no grounds for a claim of malpractice. Malpractice risks associated with informal consultation appear to be minimal, regardless of the method of communication. While "informal consultation" is not a term used by the courts, the courts have applied a consistent set of criteria that help define the legal parameters of this activity.