Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community.
Information disclosure during the informed consent process presents a dilemma. If too little information is presented, participants are unable to make an informed decision. Exhaustive disclosure is, however, a practical impossibility. In the United States, this dilemma was historically navigated in...
| Publicado en: | American Journal of Bioethics Vol. 26; no. 10; pp. 16 - 30 |
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| Autores principales: | , , , , , |
| Formato: | Journal Article |
| Publicado: |
Taylor & Francis Ltd
Oct2026
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=197184372&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 197184372 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 15265161 FKZ jtl: American Journal of Bioethics issn: 15265161 maglogo: N pubinfo: dt: Oct2026 vid: 26 iid: 10 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 197184372 191969308 10.1080/15265161.2026.2632012 197184372 ppf: 16 ppct: 14 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community. aug: au: Khatiwada, Manisha Howard, Dana Krempley, Tema Walton, Katherine Williams, Crystal Graber, Abraham David affil: The Ohio State University sug: subj: Autism Spectrum Disorder Psychosocial Factors Research Subjects Psychosocial Factors Research, Medical Ethical Issues Consent (Research) Ethical Issues Communication Research Ethics United States Ethical Dilemmas Neurodiversity Relational Autonomy Minority Groups Human Rights Bioethics Government Regulations Decision Making Cultural Diversity Researcher-Subject Relations ab: Information disclosure during the informed consent process presents a dilemma. If too little information is presented, participants are unable to make an informed decision. Exhaustive disclosure is, however, a practical impossibility. In the United States, this dilemma was historically navigated in the research context by requiring that disclosure include enumerated items: the purpose of the research, potential risks, etc. In 2018, federal guidelines were updated to require that disclosure adhere to the reasonable person standard, whereby participants must be given all information that an "average" person would want to know. Drawing on the Autistic community's unique concerns regarding research, we argue that, because of its emphasis on the informational wants of the "average" person, the reasonable person standard systematically fails to meet the informational needs of (many) people from minoritized populations. We argue for an individualized understanding of the reasonable person standard and provide recommendations for research teams. pubtype: Academic Journal doctype: Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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