Défis éthiques en génomique de l’autisme : recommandations pour les chercheurs

Titre original en anglais : Ethical challenges in autism genomics: Recommendations for researchers

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Natri, H. M., Chapman, C. R., Heraty, S., Dwyer, P., Walker, N., Kapp, S. K., Dron, H. A., Martinez-Agosto, J. A., Mikkola, L., & Doherty, M. (2023). Ethical challenges in autism genomics: Recommendations for researchers. European Journal of Medical Genetics, 66(9), 104810. https://doi.org/10.1016/j.ejmg.2023.104810

Date de publication: 19/07/2023 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
10
Auteur·ices de la publication identifié·es comme autistes
5 / 10 (50,0 %)
  1. Heini M Natri *
  2. Carolyn Riley Chapman
  3. Síofra Heraty
  4. Patrick Dwyer *
  5. Nick Walker *
  1. Steven K. Kapp *
  2. Heather Armstrong Dron
  3. Julian A. Martinez-Agosto
  4. Lea Mikkola
  5. Mary Doherty *

Résumé

Une recherche génétique équitable et juste, ainsi que sa traduction clinique, nécessitent un examen des questions éthiques relatives aux communautés vulnérables et marginalisées. Les communautés de recherche et de défense des droits dans le domaine de l’autisme ont exprimé des préoccupations concernant les pratiques actuelles de la recherche en génétique, exhortant le domaine à évoluer vers des paradigmes et des pratiques qui garantissent des bénéfices et évitent de nuire aux participants à la recherche et à la communauté autiste au sens large. En nous appuyant sur un cadre de principes bioéthiques, nous présentons le contexte de ces préoccupations et formulons des recommandations pour une recherche génétique et génomique sur l’autisme éthiquement durable et orientée vers la justice. Avec pour objectif principal d’améliorer la santé, le bien-être et l’autonomie des personnes autistes, nous formulons des recommandations visant à orienter la définition des priorités, la conduite responsable de la recherche et les pratiques de consentement éclairé. En outre, nous examinons les défis éthiques concernant particulièrement la recherche impliquant des personnes et des groupes hautement vulnérables, tels que ceux ayant des capacités cognitives ou de communication altérées. Enfin, nous examinons la traduction clinique des études de génétique de l’autisme, y compris l’utilisation de tests génétiques. Ces lignes directrices, élaborées par un groupe de travail interdisciplinaire composé de personnes autistes et non autistes, contribueront à exploiter le potentiel de la recherche en génétique afin d’améliorer la qualité de vie des personnes autistes et sont largement applicables à divers traits stigmatisés et communautés vulnérables.

Equitable and just genetic research and clinical translation require an examination of the ethical questions pertaining to vulnerable and marginalized communities. Autism research and advocate communities have expressed concerns over current practices of genetics research, urging the field to shift towards paradigms and practices that ensure benefits and avoid harm to research participants and the wider autistic community. Building upon a framework of bioethical principles, we provide the background for the concerns and present recommendations for ethically sustainable and justice-oriented genetic and genomic autism research. With the primary goal of enhancing the health, well-being, and autonomy of autistic persons, we make recommendations to guide priority setting, responsible research conduct, and informed consent practices. Further, we discuss the ethical challenges particularly pertaining to research involving highly vulnerable individuals and groups, such as those with impaired cognitive or communication ability. Finally, we consider the clinical translation of autism genetics studies, including the use of genetic testing. These guidelines, developed by an interdisciplinary working group comprising autistic and non-autistic individuals, will aid in leveraging the potential of genetics research to enhance the quality of life of autistic individuals and are widely applicable across stigmatized traits and vulnerable communities.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
94
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
9 / 94 (9,6 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
47 / 509 (9,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 47 / 135 (34,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 41 / 481 (8,5 %).
Occurrences citées rattachées à la base AutiHub
135 / 509 (26,5 %)
Auteurices cité·es distinct·es rattaché·es : 118 / 481 (24,5 %)
Occurrences rattachées, non identifiées comme autistes
88 / 135 (65,2 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 88 / 509 (17,3 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 77 / 118 (65,3 %).
2 entrées de bibliographie citée n’ont pas pu être entièrement enrichies à partir des métadonnées DOI.
Crossref: introuvable (1) · DataCite: introuvable (1)
  1. Julie F Gutiérrez , Komal Bajaj , Susan D Klugman (2013). Prenatal screening for fragile x: carriers, controversies, and counseling. Rev. Obstet. Gynecol., 6(1), e1.
    Type: Article OpenAlex: https://openalex.org/W1581109241
    Crossref OpenAlex
  2. Asbury (s. d.). 10. 1016/j.ejmg. 2023. 104810_bib1
    Type: Autre
    Crossref
  3. Antoine Rajkovic , Allison L. Cirino , Tala Berro , Diane R. Koeller , Kimberly Zayhowski (2022). Transgender and gender-diverse (TGD) individuals’ perspectives on research seeking genetic variants associated with TGD identities: a qualitative study . Journal of Community Genetics, 13(1), 31-48. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s12687-021-00554-z OpenAlex: https://openalex.org/W3205345687
    Crossref OpenAlex OpenCitations
  4. Willi Horner-Johnson , Danielle Bailey (2013). Assessing Understanding and Obtaining Consent From Adults With Intellectual Disabilities for a Health Promotion Study . Journal of Policy and Practice in Intellectual Disabilities, 10(3), 260-265. Wiley.
    Type: Article DOI: 10.1111/jppi.12048 OpenAlex: https://openalex.org/W1750480468
    Crossref OpenAlex
  5. Jerome Atutornu , Richard Milne , Alesia Costa , Christine Patch , Anna Middleton (2022). Towards equitable and trustworthy genomics research . eBioMedicine, 76, 103879. Elsevier BV.
    Type: Article DOI: 10.1016/j.ebiom.2022.103879 OpenAlex: https://openalex.org/W4210979304
    Crossref OpenAlex OpenCitations
  6. Jacob A. S. Vorstman , Jeremy R. Parr , Daniel Moreno-De-Luca , Richard J. L. Anney , John I. Nurnberger Jr , Joachim F. Hallmayer (2017). Autism genetics: opportunities and challenges for clinical translation . Nature Reviews Genetics, 18(6), 362-376. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nrg.2017.4 OpenAlex: https://openalex.org/W2592063610
    Crossref OpenAlex OpenCitations
  7. Jane Kaye , Edgar A Whitley , David Lund , Michael Morrison , Harriet Teare , Karen Melham (2015). Dynamic consent: a patient interface for twenty-first century research networks . European Journal of Human Genetics, 23(2), 141-146. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/ejhg.2014.71 OpenAlex: https://openalex.org/W1983062003
    Crossref OpenAlex OpenCitations
  8. Beauchamp (2019). Principles of Biomedical Ethics .
    Type: Autre
    Crossref
  9. Jarle Johannessen , Terje Nærland , Sigrun Hope , Tonje Torske , Anne Høyland , Jana Strohmaier et al. (2017). Parents’ Attitudes toward Clinical Genetic Testing for Autism Spectrum Disorder—Data from a Norwegian Sample . International Journal of Molecular Sciences, 18(5), 1078. MDPI AG.
    Type: Article DOI: 10.3390/ijms18051078 OpenAlex: https://openalex.org/W2615697358
    Crossref OpenAlex OpenCitations
  10. Clare Williams , Priscilla Alderson , Bobbie Farsides (2002). Is nondirectiveness possible within the context of antenatal screening and testing? Social Science & Medicine, 54(3), 339-347. Elsevier BV.
    Type: Article DOI: 10.1016/s0277-9536(01)00032-6 OpenAlex: https://openalex.org/W1985901486
    Crossref OpenAlex
  11. Colleen M. Berryessa , Mildred K. Cho (2013). Ethical, Legal, Social, and Policy Implications of Behavioral Genetics . Annual Review of Genomics and Human Genetics, 14(1), 515-534. Annual Reviews.
    Type: Article DOI: 10.1146/annurev-genom-090711-163743 OpenAlex: https://openalex.org/W2139016465
    Crossref OpenAlex OpenCitations
  12. John W. Maloy , Pat F. Bass (2020). Understanding Broad Consent . Ochsner Journal, 20(1), 81-86. Ochsner Journal.
    Type: Article DOI: 10.31486/toj.19.0088 OpenAlex: https://openalex.org/W3015010345
    Crossref OpenAlex OpenCitations
  13. Kenneth V. Iserson (1999). PRINCIPLES OF BIOMEDICAL ETHICS . Emergency Medicine Clinics of North America, 17(2), 283-306. Elsevier BV.
    Type: Article DOI: 10.1016/s0733-8627(05)70060-2 OpenAlex: https://openalex.org/W2023354014
    OpenAlex
  14. Lauren Bishop-Fitzpatrick , Amy J. H. Kind (2017). A Scoping Review of Health Disparities in Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 47(11), 3380-3391. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3251-9 OpenAlex: https://openalex.org/W2740425314
    Crossref OpenAlex OpenCitations
  15. Virginia Gewin (2023). NIH faces calls to change its ‘ableist’ mission statement . Nature. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/d41586-023-00260-5 OpenAlex: https://openalex.org/W4318309137
    Crossref OpenAlex OpenCitations
  16. UmeshChandra Gupta , Saifuddin Kharawala (2012). Informed consent in psychiatry clinical research: A conceptual review of issues, challenges, and recommendations . Perspectives in Clinical Research, 3(1), 8. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.4103/2229-3485.92301 OpenAlex: https://openalex.org/W2026138453
    Crossref OpenAlex OpenCitations
  18. T. J. Kasperbauer , Colin Halverson (2021). Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues . Frontiers in Medicine, 8, 686264-686264. Frontiers Media SA.
    Type: Article DOI: 10.3389/fmed.2021.686264 OpenAlex: https://openalex.org/W3180455487
    Crossref OpenAlex OpenCitations
  19. Thomas A. Faunce (2008). The Oxford Textbook of Clinical Research Ethics . JAMA, 300(12), 1466. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jama.300.12.1466-b OpenAlex: https://openalex.org/W2040847932
    OpenAlex
  21. Nicholas Lennox , Michael A. Taylor , T. Rey‐Conde , C. Bain , D. M. Purdie , F. Boyle (2005). Beating the barriers: recruitment of people with intellectual disability to participate in research . Journal of Intellectual Disability Research, 49(4), 296-305. Wiley.
    Type: Article DOI: 10.1111/j.1365-2788.2005.00618.x OpenAlex: https://openalex.org/W2127571361
    Crossref OpenAlex OpenCitations
  22. Erik Parens , Adrienne Asch (2003). Disability rights critique of prenatal genetic testing: Reflections and recommendations . Mental Retardation and Developmental Disabilities Research Reviews, 9(1), 40-47. Wiley.
    Type: Article DOI: 10.1002/mrdd.10056 OpenAlex: https://openalex.org/W2046280650
    Crossref OpenAlex OpenCitations
  23. Dearbhail Bracken-Roche , Emily Bell , Mary Ellen Macdonald , Éric Racine (2017). The concept of ‘vulnerability’ in research ethics: an in-depth analysis of policies and guidelines . Health Research Policy and Systems, 15(1), 8. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12961-016-0164-6 OpenAlex: https://openalex.org/W2587319655
    Crossref OpenAlex OpenCitations
  24. Ricci C. C. Pang , Mimi S. H. Ho , Paul W. C. Wong (2024). A Review of the Literature on the Multiple Forms of Stigmatization of Caregivers of Children with Autism Among Ethnic Minority Groups . Journal of Racial and Ethnic Health Disparities, 11(1), 545-559. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40615-023-01540-6 OpenAlex: https://openalex.org/W4323294068
    Crossref OpenAlex OpenCitations
  25. William M. McMahon , Bonnie Jeanne Baty , Jeffrey Botkin (2006). Genetic counseling and ethical issues for autism . American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 142C(1), 52-57. Wiley.
    Type: Article DOI: 10.1002/ajmg.c.30082 OpenAlex: https://openalex.org/W2054596744
    Crossref OpenAlex OpenCitations
  26. Loryn Byres , Emily Morris , Jehannine Austin (2023). Exploring Autistic adults’ perspectives on genetic testing for autism . Genetics in Medicine, 25(8), 100021. Elsevier BV.
    Type: Article DOI: 10.1016/j.gim.2023.100021 OpenAlex: https://openalex.org/W4317627181
    Crossref OpenAlex OpenCitations
  28. Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315577517 OpenAlex: https://openalex.org/W2108322879
    Crossref OpenAlex OpenCitations
  29. Eilidh Cage , Catherine J. Crompton , Sarah Dantas , Khiah Strachan , Rachel Birch * , Mark Robinson et al. (2022). What are the autism research priorities of autistic adults in Scotland? PsyArXiv. Center for Open Science.
    Type: Prépublication DOI: 10.31234/osf.io/nbq8h OpenAlex: https://openalex.org/W4307451775
    Crossref OpenAlex
  30. Katrina G. Claw , Matthew Z. Anderson , Rene L. Begay , Krystal S. Tsosie , Keolu Fox , Nanibaa’ A. Garrison et al. (2018). A framework for enhancing ethical genomic research with Indigenous communities . Nature Communications, 9(1), 2957. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41467-018-05188-3 OpenAlex: https://openalex.org/W2884940558
    Crossref OpenAlex OpenCitations
  31. M. Ariel Cascio , Jonathan A. Weiss , Éric Racine (2021). Making Autism Research Inclusive by Attending to Intersectionality: a Review of the Research Ethics Literature . Review Journal of Autism and Developmental Disorders, 8(1), 22-36. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-020-00204-z OpenAlex: https://openalex.org/W3025970378
    Crossref OpenAlex OpenCitations
  32. Alexander A. Iyer , Dimah Saade , Diana Bharucha-Goebel , A. Reghan Foley , Gilberto ‘Mike’ Averion , Eduardo Paredes et al. (2021). Ethical challenges for a new generation of early-phase pediatric gene therapy trials . Genetics in Medicine, 23(11), 2057-2066. Elsevier BV.
    Type: Article DOI: 10.1038/s41436-021-01245-3 OpenAlex: https://openalex.org/W3182100425
    Crossref OpenAlex OpenCitations
  33. Paige E. Cervantes , Maya Matheis , Jasper Estabillo , Dana E. M. Seag , Katherine L. Nelson , Robin Peth-Pierce et al. (2021). Trends Over a Decade in NIH Funding for Autism Spectrum Disorder Services Research . Journal of Autism and Developmental Disorders, 51(8), 2751-2763. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04746-3 OpenAlex: https://openalex.org/W3092435479
    Crossref OpenAlex OpenCitations
  34. Anna Hellquist , Kristiina Tammimies (2022). Access, utilization, and awareness for clinical genetic testing in autism spectrum disorder in Sweden: A survey study . Autism, 26(7), 1795-1804. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211066130 OpenAlex: https://openalex.org/W4200247393
    Crossref OpenAlex OpenCitations
  35. Ericka L. Wodka , Pamela Mathy , Luther Kalb (2013). Predictors of Phrase and Fluent Speech in Children With Autism and Severe Language Delay . Pediatrics, 131(4), e1128-e1134. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2012-2221 OpenAlex: https://openalex.org/W2150539150
    Crossref OpenAlex OpenCitations
  37. Sue Fletcher‐Watson , Fabio Apicella , Bonnie Auyeung , Stepanka Beranova , Frederique Bonnet-Brilhault , Ricardo Canal‐Bedia et al. (2017). Attitudes of the autism community to early autism research . Autism, 21(1), 61-74. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315626577 OpenAlex: https://openalex.org/W2339741724
    Crossref OpenAlex OpenCitations
  38. Fida K. Dankar , Marton Gergely , Samar K. Dankar (2019). Informed Consent in Biomedical Research . Computational and Structural Biotechnology Journal, 17, 463-474. American Association for the Advancement of Science (AAAS).
    Type: Article DOI: 10.1016/j.csbj.2019.03.010 OpenAlex: https://openalex.org/W2922617862
    Crossref OpenAlex OpenCitations
  39. T. A. Meridian McDonald , Audrey Scudder (2024). Mind the NIH-Funding Gap: Structural Discrimination in Physical Health–Related Research for Cognitively Able Autistic Adults . Journal of Autism and Developmental Disorders, 54(4), 1411-1424. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-022-05856-w OpenAlex: https://openalex.org/W4315783188
    Crossref OpenAlex OpenCitations
  40. Emily F. M. Fitzpatrick , Alexandra L. C. Martiniuk , Heather D’Antoine , June Oscar , Maureen Carter , Elizabeth J. Elliott (2016). Seeking consent for research with indigenous communities: a systematic review . BMC Medical Ethics, 17(1), 65. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12910-016-0139-8 OpenAlex: https://openalex.org/W2535437281
    Crossref OpenAlex OpenCitations
  41. Géraldine Dawson , Lauren Franz , Sam Brandsen * (2022). At a Crossroads—Reconsidering the Goals of Autism Early Behavioral Intervention From a Neurodiversity Perspective . JAMA Pediatrics, 176(9), 839. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapediatrics.2022.2299 OpenAlex: https://openalex.org/W4285024688
    Crossref OpenAlex OpenCitations
  43. (2014). National commission for the protection of human subjects of biomedical and behavioral research. The belmont report. Ethical principles and guidelines for the protection of human subjects of research . J. Am. Coll. Dent., 81(3), 4.
    Type: Autre
    Crossref
  44. Devaney (s. d.). 10. 1016/j.ejmg. 2023. 104810_bib18
    Type: Autre
    Crossref
  45. Rasmus Bjerregaard Mikkelsen , Mickey Gjerris , Gunhild Waldemar , Peter Sandøe (2019). Broad consent for biobanks is best – provided it is also deep . BMC Medical Ethics, 20(1), 71. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12910-019-0414-6 OpenAlex: https://openalex.org/W2981250891
    Crossref OpenAlex OpenCitations
  46. Ipsita Dey , Sreerupa Chakrabarty , Rajanya Nandi , Rakshita Shekhar , Sakhi Singhi , Shoba Nayar et al. (2024). Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India . Autism, 28(1), 187-198. SAGE Publications.
    Type: Article DOI: 10.1177/13623613231154067 OpenAlex: https://openalex.org/W4361267800
    Crossref OpenAlex OpenCitations
  47. Holly K. Harris , Georgios D. Sideridis , William J. Barbaresi , Elizabeth Harstad (2020). Pathogenic Yield of Genetic Testing in Autism Spectrum Disorder . Pediatrics, 146(4). American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2019-3211 OpenAlex: https://openalex.org/W3085780485
    Crossref OpenAlex OpenCitations
  48. Jeffrey S. Farroni , Jessica A. Moore , Colleen M. Gallagher (2017). An Ethical Framework for Disclosing Individual Genetic Findings to Patients, Research Participants, and Relatives . Dans Ethical Challenges in Oncology (pp. 275-296). Elsevier.
    Type: Chapitre de livre DOI: 10.1016/b978-0-12-803831-4.00018-x OpenAlex: https://openalex.org/W2733368296
    Crossref OpenAlex OpenCitations
  50. Jinan Zeidan , Éric Fombonne , Julie Scorah , Alaa T. Ibrahim , Maureen S. Durkin , Shekhar Saxena et al. (2022). Global prevalence of autism: A systematic review update . Autism Research, 15(5), 778-790. Wiley.
    Type: Article DOI: 10.1002/aur.2696 OpenAlex: https://openalex.org/W4214849391
    Crossref OpenAlex OpenCitations
  51. Karina Griesi-Oliveira , Andréa Laurato Sertié (2017). Autism spectrum disorders: an updated guide for genetic counseling . Einstein (São Paulo), 15(2), 233-238. FapUNIFESP (SciELO).
    Type: Article DOI: 10.1590/s1679-45082017rb4020 OpenAlex: https://openalex.org/W2739906482
    Crossref OpenAlex OpenCitations
  53. E. Morris , M. O’Donovan , A. Virani , J. Austin (2022). An ethical analysis of divergent clinical approaches to the application of genetic testing for autism and schizophrenia . Human Genetics, 141(5), 1069-1084. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s00439-021-02349-1 OpenAlex: https://openalex.org/W3194144289
    Crossref OpenAlex OpenCitations
  54. Ellis (s. d.). 10. 1016/j.ejmg. 2023. 104810_bib22
    Type: Autre
    Crossref
  55. World Medical , Association (2022). Science must respect the dignity and rights of all humans . Nature Human Behaviour, 6(8), 1029-1031. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41562-022-01443-2 OpenAlex: https://openalex.org/W4293068611
    Crossref OpenAlex OpenCitations
  56. Portia Ho , Jenny Downs , Caroline Bulsara , Shane Patman , Anne‐Marie Hill (2018). Addressing challenges in gaining informed consent for a research study investigating falls in people with intellectual disability . British Journal of Learning Disabilities, 46(2), 92-100. Wiley.
    Type: Article DOI: 10.1111/bld.12217 OpenAlex: https://openalex.org/W2790565607
    Crossref OpenAlex OpenCitations
  57. Emanuel (2008). An ethical framework for biomedical research .
    Type: Autre
    Crossref
  58. Jarle Johannessen , Terje Nærland , Sigrun Hope , Tonje Torske , Anett Kaale , Katrine V. Wirgenes et al. (2022). Attitudes among parents of persons with autism spectrum disorder towards information about genetic risk and future health . European Journal of Human Genetics, 30(10), 1138-1146. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41431-021-00966-y OpenAlex: https://openalex.org/W3212607254
    Crossref OpenAlex OpenCitations
  60. Faden (1986). Philip Frankilin Wagley professor of biomedical ethics and director of the bioethics Institute Ruth R Faden, Beauchamp TL .
    Type: Autre
    Crossref
  61. Samuel A. Tisherman (2018). Defining “Community” and “Consultation” for Emergency Research that Requires an Exception from Informed Consent . AMA Journal of Ethics, 20(5), 467-474. American Medical Association (AMA).
    Type: Article DOI: 10.1001/journalofethics.2018.20.5.stas1-1805 OpenAlex: https://openalex.org/W2800227435
    Crossref OpenAlex OpenCitations
  62. Thomas Frazier , Géraldine Dawson , Donna S. Murray , Andy Shih , Jessica Snyder Sachs , Angela Geiger (2018). Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders . Journal of Autism and Developmental Disorders, 48(11), 3965-3971. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3642-6 OpenAlex: https://openalex.org/W2807852720
    AutiHub · Centre de documentation Crossref OpenAlex OpenCitations
  63. Agata Ferretti , Marcello Ienca , Mark Sheehan , Alessandro Blasimme , Edward S. Dove , Bobbie Farsides et al. (2021). Ethics review of big data research: What should stay and what should be reformed? BMC Medical Ethics, 22(1), 51-51. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12910-021-00616-4 OpenAlex: https://openalex.org/W3158718386
    Crossref OpenAlex OpenCitations
  64. Diana Weiting Tan (2023). Early-Career Autism Researchers Are Shifting Their Research Directions: Tragedy or Opportunity? Autism in Adulthood, 5(3), 218-224. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2023.0021 OpenAlex: https://openalex.org/W4362579670
    Crossref OpenAlex OpenCitations
  65. Janice Light , David McNaughton , Jessica Caron (2019). New and emerging AAC technology supports for children with complex communication needs and their communication partners: State of the science and future research directions . Augmentative and Alternative Communication, 35(1), 26-41. Informa UK Limited.
    Type: Article DOI: 10.1080/07434618.2018.1557251 OpenAlex: https://openalex.org/W2910312475
    Crossref OpenAlex OpenCitations
  66. (s. d.). Fletcher-Watson S. DART Lab Student Outputs. Published online August 16, 2020. doi:10. 17605/OSF. IO/HZEX2.
    Type: Autre
    Crossref
  67. Ewelina Rydzewska , Laura A. Hughes-McCormack , Christopher Gillberg , Angela Henderson , Cecilia MacIntyre , Julie Rintoul et al. (2019). General health of adults with autism spectrum disorders – A whole country population cross-sectional study . Research in Autism Spectrum Disorders, 60(April 2019), 59-66. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2019.01.004 OpenAlex: https://openalex.org/W2912237256
    Crossref OpenAlex OpenCitations
  68. Paul Steven Miller , Rebecca Leah Levine (2013). Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities . Genetics in Medicine, 15(2), 95-102. Elsevier BV.
    Type: Article DOI: 10.1038/gim.2012.102 OpenAlex: https://openalex.org/W3124158599
    Crossref OpenAlex OpenCitations
  69. Amy A. Lemke , Edward D. Esplin , Aaron J. Goldenberg , Claudia Gonzaga-Jauregui , Neil A. Hanchard , Julie Harris-Wai et al. (2022). Addressing underrepresentation in genomics research through community engagement . The American Journal of Human Genetics, 109(9), 1563-1571. Elsevier BV.
    Type: Article DOI: 10.1016/j.ajhg.2022.08.005 OpenAlex: https://openalex.org/W4294119603
    Crossref OpenAlex OpenCitations
  70. Rackeb Tesfaye , Valérie Courchesne , Afiqah Yusuf , Tal Savion-Lemieux , Ilina Singh , Keiko Shikako-Thomas et al. (2019). Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities . Autism, 23(8), 1882-1896. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319831487 OpenAlex: https://openalex.org/W2924684014
    Crossref OpenAlex OpenCitations
  71. Matthew S. McCoy , Emily Y. Liu , Amy S. F. Lutz , Dominic Sisti (2020). Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation . The American Journal of Bioethics, 20(4), 13-24. Informa UK Limited.
    Type: Article DOI: 10.1080/15265161.2020.1730482 OpenAlex: https://openalex.org/W3012817899
    Crossref OpenAlex OpenCitations
  72. Joseph Millum , Megan Campbell , Florencia Luna , Arianne Malekzadeh , Quarraisha Abdool Karim (2019). Ethical challenges in global health-related stigma research . BMC Medicine, 17(1), 84. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12916-019-1317-6 OpenAlex: https://openalex.org/W2943700713
    Crossref OpenAlex OpenCitations
  73. Sarah Griffiths , Carrie Allison , Rebecca Kenny , Rosemary Holt , Paula Smith , Simon Baron-Cohen (2019). The Vulnerability Experiences Quotient (VEQ): A Study of Vulnerability, Mental Health and Life Satisfaction in Autistic Adults . Autism Research, 12(10), 1516-1528. Wiley.
    Type: Article DOI: 10.1002/aur.2162 OpenAlex: https://openalex.org/W2949176131
    Crossref OpenAlex OpenCitations
  74. Shixi Zhao , Wei-Ju Chen , Shweta U. Dhar , Tanya N. Eble , Oi-Man Kwok , Lei-Shih Chen (2019). Genetic Testing Experiences Among Parents of Children with Autism Spectrum Disorder in the United States . Journal of Autism and Developmental Disorders, 49(12), 4821-4833. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04200-z OpenAlex: https://openalex.org/W2974348575
    Crossref OpenAlex OpenCitations
  75. Bracha L. Kreiman , Richard G. Boles (2020). State of the Art of Genetic Testing for Patients With Autism: A Practical Guide for Clinicians . Seminars in Pediatric Neurology, 34, 100804. Elsevier BV.
    Type: Article DOI: 10.1016/j.spen.2020.100804 OpenAlex: https://openalex.org/W3010520317
    Crossref OpenAlex OpenCitations
  77. Connor Tom Keating (2021). Participatory Autism Research: How Consultation Benefits Everyone . Frontiers in Psychology, 12, 713982-713982. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2021.713982 OpenAlex: https://openalex.org/W3193937630
    Crossref OpenAlex OpenCitations
  78. Zohreh Talebizadeh , Ayten Shah , AutGO Working Group (2020). The AutGO Initiative: A Conceptual Framework for Developing Genetics‐Outcomes Research Hypotheses . Autism Research, 13(8), 1286-1299. Wiley.
    Type: Article DOI: 10.1002/aur.2331 OpenAlex: https://openalex.org/W3040421960
    Crossref OpenAlex OpenCitations
  79. Lisa I. Iezzoni , Sowmya R. Rao , Julie Ressalam , Dragana Bolcic-Jankovic , Nicole D. Agaronnik , Karen Donelan et al. (2021). Physicians’ Perceptions Of People With Disability And Their Health Care . Health Affairs, 40(2), 297-306. Health Affairs Publishing, LLC.
    Type: Article DOI: 10.1377/hlthaff.2020.01452 OpenAlex: https://openalex.org/W3128418106
    Crossref OpenAlex OpenCitations
  80. Stephen Thompson , Mariah Cannon , Mary Wickenden (2020). Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use . Innocenti Working Papers. United Nations Publications.
    Type: Autre DOI: 10.18356/051ecd9a-en OpenAlex: https://openalex.org/W3045637530
    Crossref OpenAlex
  81. Arianna Manzini , Emily J.H. Jones , Tony Charman , Mayada Elsabbagh , Mark H. Johnson , Ilina Singh (2021). Ethical dimensions of translational developmental neuroscience research in autism . Journal of Child Psychology and Psychiatry, 62(11), 1363-1373. Wiley.
    Type: Article DOI: 10.1111/jcpp.13494 OpenAlex: https://openalex.org/W3176566720
    Crossref OpenAlex OpenCitations
  82. Wrigley Kline (2022). How geneticists can gain greater buy-in from the autistic community . Spectrum. Simons Foundation.
    Type: Article DOI: 10.53053/xzsi8371 OpenAlex: https://openalex.org/W4294908177
    Crossref OpenAlex
  83. Takahiro Soda , Stacey Pereira , Brent J. Small , Laura N. Torgerson , Katrina A. Muñoz , Jehannine Austin et al. (2021). Child and Adolescent Psychiatrists’ Perceptions of Utility and Self-rated Knowledge of Genetic Testing Predict Usage for Autism Spectrum Disorder . Journal of the American Academy of Child & Adolescent Psychiatry, 60(6), 657-660. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2021.01.022 OpenAlex: https://openalex.org/W3132810618
    Crossref OpenAlex OpenCitations
  84. Jakub Kopal , Lucina Q. Uddin , Danilo Bzdok (2023). The end game: respecting major sources of population diversity . Nature Methods, 20(8), 1122-1128. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41592-023-01812-3 OpenAlex: https://openalex.org/W4323049011
    Crossref OpenAlex OpenCitations
  85. Veronika Lipphardt , Gudrun A. Rappold , Mihai Surdu (2021). Representing vulnerable populations in genetic studies: The case of the Roma . Science in Context, 34(1), 69-100. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0269889722000023 OpenAlex: https://openalex.org/W4294145340
    Crossref OpenAlex OpenCitations
  86. Todd Lencz , Maya Sabatello , Anna Docherty , Roseann E Peterson , Takahiro Soda , Jehannine Austin et al. (2022). Concerns about the use of polygenic embryo screening for psychiatric and cognitive traits . The Lancet Psychiatry, 9(10), 838-844. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(22)00157-2 OpenAlex: https://openalex.org/W4289525557
    Crossref OpenAlex
  87. Mengyu Lim , Alessandro Carollo , Dagmara Dimitriou , Gianluca Esposito (2022). Recent Developments in Autism Genetic Research: A Scientometric Review from 2018 to 2022 . Genes, 13(9), 1646. MDPI AG.
    Type: Article DOI: 10.3390/genes13091646 OpenAlex: https://openalex.org/W4295766684
    Crossref OpenAlex OpenCitations
  88. Monica B. Vela , Amarachi I. Erondu , Nichole A. Smith , Monica E. Peek , James N. Woodruff , Marshall H. Chin (2022). Eliminating Explicit and Implicit Biases in Health Care: Evidence and Research Needs . Annual Review of Public Health, 43(1), 477-501. Annual Reviews.
    Type: Article DOI: 10.1146/annurev-publhealth-052620-103528 OpenAlex: https://openalex.org/W4206528627
    Crossref OpenAlex OpenCitations
  89. Stephanie Meredith , Scotti Brackett , Keith M. Diaz , Kathleen G. Freeman , Erin Huggins , Hadia Khan et al. (2023). Recommendations to improve the patient experience and avoid bias when prenatal screening/testing . Disability and Health Journal, 16(2), 101401. Elsevier BV.
    Type: Article DOI: 10.1016/j.dhjo.2022.101401 OpenAlex: https://openalex.org/W4308743346
    Crossref OpenAlex
  90. (2010). Medical Profiling and Online Medicine: the Ethics of “Personalised Healthcare” in a Consumer Age .
    Type: Autre
    Crossref
  91. Office for Human Research Protections (OHRP) (s. d.). 10. 1016/j.ejmg. 2023. 104810_bib71
    Type: Autre
    Crossref
  92. Orla C Putnam , Genessa Eddy , Jessica Goldblum , Madison Swisher , Clare Harrop (2023). How autistic adults’ priorities for autism research differ by gender identity: A mixed-methods study . Women's Health, 19, 17455057231160342-17455057231160342. SAGE Publications.
    Type: Article DOI: 10.1177/17455057231160342 OpenAlex: https://openalex.org/W4361982066
    Crossref OpenAlex
  93. Iva Strnadová , Julie Loblinzk , Jackie Leach Scully , Joanne Danker , Michelle Tso , Karen-Maia Jackaman et al. (2023). “I am not a number!” Opinions and preferences of people with intellectual disability about genetic healthcare . European Journal of Human Genetics, 31(9), 1057-1065. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41431-023-01282-3 OpenAlex: https://openalex.org/W4317548855
    Crossref OpenAlex
  94. Sue Fletcher‐Watson (2020). DART lab student outputs . Open MIND. OSF.
    Type: Enregistrement DOI: 10.17605/osf.io/hzex2 OpenAlex: https://openalex.org/W6962772061
    OpenAlex