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Record W3005251817 · doi:10.1080/09687599.2020.1712189

Empowerment in decision-making for autistic people in research

2020· article· en· W3005251817 on OpenAlex
M. Ariel Cascio, Jonathan A. Weiss, Éric Racine

Why this work is in the frame

A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.

affAt least one author lists a Canadian institution in the pinned OpenAlex snapshot.
fundA Canadian funder is recorded on the work.

Bibliographic record

VenueDisability & Society · 2020
Typearticle
Languageen
FieldNeuroscience
TopicAutism Spectrum Disorder Research
Canadian institutionsYork UniversityMcGill UniversityUniversité de MontréalMontreal Clinical Research Institute
FundersKids Brain Health Network
KeywordsAutismEmpowermentContext (archaeology)Research ethicsPower (physics)Informed consentPsychologyEngineering ethicsSociologyPublic relationsPolitical scienceDevelopmental psychologyMedicineLawAlternative medicine

Abstract

fetched live from OpenAlex

Empowerment in research is important in many autism and autistic communities and an important part of ‘nothing about us without us’. It is also an important component of person-oriented research ethics. This article reviews the literature on ethics in autism research for information related to decision-making empowerment for autistic people. A review of 81 articles reveals several themes and specific strategies. Empowerment is important for, but also goes beyond, establishing informed consent. Empowerment is a form of participant and community engagement, and necessarily shaped by specific context. The view of research ethics put forth in this article envisions ethics as a potential avenue for empowerment, where research participants are able to decide how to be involved and to shape research processes and contexts. This view of research ethics is aligned with the aspirations of many in advocacy communities, though it may not correspond to conventional understandings of research ethics.Points of interestThis article talks about ethics in autism research.It focuses on the importance of people with autism having the power to make choices about research.It describes what published articles have said about this issue.Making choices about research includes not only the choice to take part in a study or not, but also many other choices before, during, and after the study.The way that this article talks about research ethics helps achieve goals of many autistic people and disabled people to be included.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.002
metaresearch head score (Gemma)0.008
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: Observational
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.164
Threshold uncertainty score1.000

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0020.008
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0000.002
Science and technology studies0.0000.001
Scholarly communication0.0000.000
Open science0.0010.001
Research integrity0.0000.001
Insufficient payload (model declined to judge)0.0000.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.136
GPT teacher head0.445
Teacher spread0.309 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it