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  1. Bioethics and the Moral Authority of Experience.Ryan H. Nelson, Bryanna Moore, Holly Fernandez Lynch, Miranda R. Waggoner & Jennifer Blumenthal-Barby - 2022 - American Journal of Bioethics 23 (1):12-24.
    While experience often affords important knowledge and insight that is difficult to garner through observation or testimony alone, it also has the potential to generate conflicts of interest and unrepresentative perspectives. We call this tension the paradox of experience. In this paper, we first outline appeals to experience made in debates about access to unproven medical products and disability bioethics, as examples of how experience claims arise in bioethics and some of the challenges raised by these claims. We then motivate (...)
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  • Wrongful Medicalization and Epistemic Injustice in Psychiatry: The Case of Premenstrual Dysphoric Disorder.Anne-Marie Gagné-Julien - 2021 - European Journal of Analytic Philosophy 17 (2):(S4)5-36.
    In this paper, my goal is to use an epistemic injustice framework to extend an existing normative analysis of over-medicalization to psychiatry and thus draw attention to overlooked injustices. Kaczmarek has developed a promising bioethical and pragmatic approach to over-medicalization, which consists of four guiding questions covering issues related to the harms and benefits of medicalization. In a nutshell, if we answer “yes” to all proposed questions, then it is a case of over-medicalization. Building on an epistemic injustice framework, I (...)
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  • Representation Is Never Perfect, But Are Parents Even Representatives?Elle Benjamin, Bethany E. Ziss & B. R. George - 2020 - American Journal of Bioethics 20 (4):51-53.
    Volume 20, Issue 4, May 2020, Page 51-53.
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  • Parents of Autistic Children Are Deserving of Support.Zeljka Buturovic - 2020 - American Journal of Bioethics 20 (4):54-55.
    Volume 20, Issue 4, May 2020, Page 54-55.
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  • Representing the Autism Spectrum.Robert Chapman & Walter Veit - 2020 - American Journal of Bioethics 20 (4):46-48.
    Volume 20, Issue 4, May 2020, Page 46-48.
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  • Additional Challenges to Fair Representation in Autistic Advocacy.Sam Fellowes - 2020 - American Journal of Bioethics 20 (4):44-45.
    Volume 20, Issue 4, May 2020, Page 44-45.
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  • Non-Electoral Representation and Promoting Welfare—Beyond Descriptive Representation.Lucy Frith - 2020 - American Journal of Bioethics 20 (4):56-58.
    McCoy et al. (2020) give a finely tuned analysis of the role and responsibilities of non-elected or self-appointed representatives in public policy. They take the example of autism activism to illu...
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  • Beyond Autism: Advocacy for Neurodevelopmental Differences.William D. Graf - 2020 - American Journal of Bioethics 20 (4):30-33.
    Volume 20, Issue 4, May 2020, Page 30-33.
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  • Hope Springs Eternal: Pitfalls of Partial Representation by Advocates Who Only Want the Best.Bryna Siegel - 2020 - American Journal of Bioethics 20 (4):38-40.
    Volume 20, Issue 4, May 2020, Page 38-40.
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  • An AI Bill of Rights: Implications for Health Care AI and Machine Learning—A Bioethics Lens.Jennifer Blumenthal-Barby - 2022 - American Journal of Bioethics 23 (1):4-6.
    Just last week (October 4, 2022), the U.S. White House released a blueprint for an A.I. Bill of Rights, consisting of “five principles and associated practices to help guide the design, use, and de...
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  • Autism Advocacy Before and After DSM-5.Ryan H. Nelson - 2020 - American Journal of Bioethics 20 (4):48-50.
    Volume 20, Issue 4, May 2020, Page 48-50.
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  • Meaningful Fissures: The Value of Divergent Agendas in Patient Advocacy.Jordan P. Richardson & Richard R. Sharp - 2020 - American Journal of Bioethics 20 (4):1-3.
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  • Neurodiversity and Autism Advocacy: Who Fits Under the Autism Tent?Kenneth A. Richman - 2020 - American Journal of Bioethics 20 (4):33-34.
    McCoy, Liu, Lutz, and Sisti (2020) raise concerns about “partial representation,” in which nonelected advocates or advocacy organizations fail to engage and hold themselves accountable to the full range of people they purport to represent. They are right to point out that the autism community is vulnerable to partial representation. This open peer commentary notes some elements among those engaged with autism that may not fit under the type of “federated model” of representation McCoy, et al recommend. Advocates should tread (...)
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  • Ethical Representation by Patient Advocacy Organizations Also Requires Responsible Management of Potential Financial Conflicts of Interest.Bethany Bruno & Susannah Rose - 2020 - American Journal of Bioethics 20 (4):59-61.
    Volume 20, Issue 4, May 2020, Page 59-61.
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  • Like Autism, Representation Falls on a Spectrum.Nanette Elster & Kayhan Parsi - 2020 - American Journal of Bioethics 20 (4):4-5.
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  • Views of Genetic Testing for Autism Among Autism Self-Advocates: A Qualitative Study.Robert Klitzman, Ekaterina Bezborodko, Wendy K. Chung & Paul S. Appelbaum - forthcoming - AJOB Empirical Bioethics.
    Background Autism self-advocates’ views regarding genetic tests for autism are important, but critical questions about their perspectives arise.Methods We interviewed 11 autism self-advocates, recruited through autism self-advocacy websites, for 1 h each.Results Interviewees viewed genetic testing and its potential pros and cons through the lens of their own indiviudal perceived challenges, needs and struggles, especially concerning stigma and discrimination, lack of accommodations and misunderstandings from society about autism, their particular needs for services, and being blamed by others and by themselves (...)
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  • Patient Representation: Mind the Gap Between Individual and Collective Claims.Karin R. Jongsma & Silke Schicktanz - 2020 - American Journal of Bioethics 20 (4):28-30.
    With the increasing attention paid to patient participation in both health care policy-making and health care research, McCoy and colleagues (2020) point to a key ethical issue, namely the quest fo...
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  • Civic Engagement, Autism and Deliberative Democracy: Prioritizing the Inclusion of Marginalized Perspectives.Holly K. Tabor - 2020 - American Journal of Bioethics 20 (4):41-43.
    Volume 20, Issue 4, May 2020, Page 41-43.
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  • Autistic Self Advocacy in the Developmental Disability Movement.Ari Ne’Eman & Julia Bascom - 2020 - American Journal of Bioethics 20 (4):25-27.
    Volume 20, Issue 4, May 2020, Page 25-27.
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  • A Care Ethics Approach to Ethical Advocacy for Community Conditions.Philip G. Day, Kristian E. Sanchack & Robert P. Lennon - 2020 - American Journal of Bioethics 20 (4):35-37.
    Volume 20, Issue 4, May 2020, Page 35-37.
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