Home Care in America: The Urgent Challenge of Putting Ethical Care into Practice.

Home care is one of the fastest-growing industries in the United States, providing valuable opportunities for millions of older adults and people with disabilities to live at home rather than in institutional settings. Home care workers assist clients with essential activities of daily living, but their wages and working conditions generally fail to reflect the importance of their work. Drawing on the work of Eva Feder Kittay and other care ethicists, we argue that good care involves attending to the needs of another out of a concern for their well-being. Such care should be standard in the home care system. Yet, because of the pervasive racial, gender, and economic inequalities that the home care industry perpetuates, home care workers and their clients cannot reasonably be expected to care about each other. We endorse reforms aimed at enabling home care workers and their clients to form and maintain professional relationships that cultivate care..

Genomics Research with Undiagnosed Children: Ethical Challenges at the Boundaries of Research and Clinical Care.

OBJECTIVE: To explore the perspectives of parents of undiagnosed children enrolled in genomic diagnosis research regarding their motivations for enrolling their children, their understanding of the potential burdens and benefits, and the extent to which their experiences ultimately aligned with or diverged from their original expectations. STUDY DESIGN: In-depth interviews were conducted with parents, audio-recorded and transcribed. A structured codebook was applied to each transcript, after which iterative memoing was used to identify themes. RESULTS: Fifty-four parents participated, including 17 (31.5%) whose child received a diagnosis through research. Themes describing parents' expectations and experiences of genomic diagnosis research included (1) the extent to which parents' motivations for participation focused on their hope that it would directly benefit their child, (2) the ways in which parents' frustrations regarding the research process confused the dual clinical and research goals of their participation, and (3) the limited clinical benefits parents ultimately experienced for their children. CONCLUSIONS: Our results suggest that parents of undiagnosed children seeking enrollment in genomic diagnosis research are at risk of a form of therapeutic misconception-in this case, diagnostic misconception. These findings indicate the need to examine the processes and procedures associated with this research to communicate appropriately and balance the potential burdens and benefits of study participation.

Passive monitoring by smart toilets for precision health.

Smart toilets are a key tool for enabling precision health monitoring in the home, but such passive monitoring has ethical considerations.

Words matter: The language of difference in human genetics.

Diversity, equity, and inclusion efforts in academia are leading publishers and journals to re-examine their use of terminology for commonly used scientific variables. This reassessment of language is particularly important for human genetics, which is focused on identifying and explaining differences between individuals and populations. Recent guidance on the use of terms and symbols in clinical practice, research, and publications is beginning to acknowledge the ways that language and concepts of difference can be not only inaccurate but also harmful. To stop perpetuating historical wrongs, those of us who conduct and publish genetic research and provide genetic health care must understand the context of the terms we use and why some usages should be discontinued. In this article, we summarize critiques of terminology describing disability, sex, gender, race, ethnicity, and ancestry in research publications, laboratory reports, diagnostic codes, and pedigrees. We also highlight recommendations for alternative language that aims to make genetics more inclusive, rigorous, and ethically sound. Even though norms of acceptable language use are ever changing, it is the responsibility of genetics professionals to uncover biases ingrained in professional practice and training and to continually reassess the words we use to describe human difference because they cause harm to patients.

Mask Mandates and Dilemmas of Disability Difference.

A number of recent legal cases in the United States have considered both disability-based exceptions to Covid-19-related mask mandates and disability-based claims to stronger masking rules in states restricting the abilities of local governments to enforce mask mandates. We argue that a proper legal and ethical analysis of such cases requires understanding the distinction between disability accommodations and disability modifications. Disability accommodations are individualized adjustments that enable qualified individuals to perform jobs or achieve access on terms comparable to those experienced by others. Disability modifications are programmatic changes to structures or policies that increase accessibility. We contend that in the context of mask mandates, modifications rather than accommodations are ethically desirable because modification-oriented policies promote disability access in a way that treats all individuals fairly, avoiding the risk of promoting misinformation and uncertainty about the health benefits of masking.

Physical Disability and Psychedelic Therapies: An Agenda for Inclusive Research and Practice.

Over the past decade, there has been an increase in the number of clinical trials for psychedelic therapies as treatments for a wide range of psychiatric conditions. We are concerned that research organizations overseeing these trials have neglected the inclusion of individuals with physical and sensory disabilities. We suggest that psychedelic research organizations should prioritize and plan for the inclusion of individuals with physical and sensory disabilities to address the mental health burdens they confront. Not doing so risks reinforcing structural ableism in healthcare: the discriminatory manifestation of lowered expectations toward people with disabilities on the part of medical providers. Drawing on scholarship from disability studies and medical ethics, we offer four recommendations for disability inclusion in research. We recognize particular populations shoulder significant mental health burdens; these populations deserve priority and should be given a range of accommodations. We emphasize the need for extensive disability awareness training for those facilitating psychedelic therapies and encourage psychedelic researchers and therapists to exercise cultural humility toward individuals with physical and sensory disabilities. This article should be the impetus for further scholarship and debate about how psychedelic research and therapies can be made accessible to members of disability communities who might benefit.

Serendipity and Social Justice: How Someone with a Physical Disability Succeeds in Clinical Bioethics.

Trainees with disabilities in health-related professions are often subjected to structural ableism in medicine: the discriminatory manifestation of lowered expectations towards people with disabilities by medical professionals. In this case study, I reflect on my experiences as the first individual with significant disabilities to be offered a postdoctoral fellowship in clinical bioethics at the National Institutes of Health. I focus on the following question: What arrangements need to be in place in order for someone with my level of disability to thrive as a clinical bioethicist? By telling my story, I show how the process of accommodating trainees with disabilities often requires creative problem-solving and a considerable amount of institutional resources. I also describe the team-based method that my mentors and I developed to enable me to complete rotations on the NIH's bioethics consultation service. If more trainees with disabilities are to succeed in clinical bioethics trainee programs, the field will have to grapple with how to develop an infrastructure for providing disability-related support across training programs. This article is the beginning of a dialogue about how to build such an infrastructure.

Enrolling Minors in COVID-19 Vaccine Trials.

It is widely agreed that an effective response to the coronavirus disease 2019 pandemic needs to include a vaccine that is safe and effective for minors. However, many current vaccine trials have no plans for when to enroll minors. Others have recently proposed enrolling minors as young as 12 years old. This lack of a systematic approach raises 2 concerns. Waiting too long to enroll minors could unjustly deny minors and their families the benefits of a vaccine and has the potential to delay an effective response to the pandemic by a year or longer. At the same time, enrolling minors too soon runs the risk of exposing them to excessive risks. With these concerns in mind, in the present article, we propose recommendations for when and how to enroll minors in vaccine trials for the coronavirus disease 2019.

Caring for People with Disabilities: An Ethics of Respect.

Eva Feder Kittay's Learning from My Daughter: The Value and Care of Disabled Minds is poised to make a major contribution to the disability literature and is likely to spark controversy among disability scholars. The book's central contribution is the articulation of an ethics of care for meeting the "genuine needs" and "legitimate wants" of people with disabilities or chronic illnesses. We applaud Kittay, who is the mother of a woman with cerebral palsy who has multiple physical and intellectual impairments, for sharing her story in such an eloquent, accessible, and personal manner. The question remains, however, as to whether Kittay's normative theory of care captures the ethical obligations that should exist between the carer and the cared-for. In demanding that the cared-for include the carer as a participant in all their interactions with others, Kittay conceptualizes what paid caregiving relationships should look like in a way we find misguided.