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.

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..

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.

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.