Stanford Advisors

All Publications

  • Genomics Research with Undiagnosed Children: Ethical Challenges at the Boundaries of Research and Clinical Care JOURNAL OF PEDIATRICS Halley, M. C., Young, J. L., Tang, C., Mintz, K. T., Lucas-Griffin, S., Maghiro, A., Ashley, E. A., Tabor, H. K., Undiagnosed Diseases Network 2023; 261
  • Genomics Research with Undiagnosed Children: Ethical Challenges at the Boundaries of Research and Clinical Care. The Journal of pediatrics Halley, M. C., Young, J. L., Tang, C., Mintz, K. T., Lucas-Griffin, S., Maghiro, A. S., Ashley, E. A., Tabor, H. K. 2023: 113537


    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.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.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.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 in order to appropriately communicate and balance the potential burdens and benefits of study participation.

    View details for DOI 10.1016/j.jpeds.2023.113537

    View details for PubMedID 37271495

  • Passive monitoring by smart toilets for precision health. Science translational medicine Ge, T. J., Rahimzadeh, V. N., Mintz, K., Park, W. G., Martinez-Martin, N., Liao, J. C., Park, S. M. 2023; 15 (681): eabk3489


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

    View details for DOI 10.1126/scitranslmed.abk3489

    View details for PubMedID 36724240

  • Disability Bioethics and the "Liabilities" of Personal Experience. The American journal of bioethics : AJOB Mintz, K. T. 2023; 23 (1): 31-33

    View details for DOI 10.1080/15265161.2022.2146805

    View details for PubMedID 36595002

  • Words matter: The language of difference in human genetics. Genetics in medicine : official journal of the American College of Medical Genetics Cho, M. K., Duque Lasio, M. L., Amarillo, I., Mintz, K. T., Bennett, R. L., Brothers, K. B. 2022


    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.

    View details for DOI 10.1016/j.gim.2022.11.011

    View details for PubMedID 36524987

  • Unlocking the Voices of Patients with Severe Brain Injury NEUROETHICS Peterson, A., Mintz, K., Owen, A. M. 2022; 15 (1)
  • Physical Disability and Psychedelic Therapies: An Agenda for Inclusive Research and Practice. Frontiers in psychiatry Mintz, K. T., Gammer, B., Khan, A. J., Shaub, G., Levine, S., Sisti, D. 2022; 13: 914458


    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.

    View details for DOI 10.3389/fpsyt.2022.914458

    View details for PubMedID 35693959

  • Serendipity and Social Justice: How Someone with a Physical Disability Succeeds in Clinical Bioethics. Narrative inquiry in bioethics Mintz, K. T. 2022; 12 (3): 265-273


    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.

    View details for DOI 10.1353/nib.2022.0061

    View details for PubMedID 37854450

  • Disability, Aging, and the Importance of Recognizing Social Supports in Medical Decision Making. The American journal of bioethics : AJOB Mintz, K. T., Magnus, D. C. 2021; 21 (11): 1-3

    View details for DOI 10.1080/15265161.2021.1984749

    View details for PubMedID 34710015

  • Is Disney Disabling? DISABILITY & SOCIETY Mintz, K. 2018; 33 (8): 1366–71