Complexites et preoccupations ethiques entourant l imagerie par resonance magnetique et le cadre scientifique en acces libre dans la recherche sur l autisme

Titre original en anglais : Ethical Complexities and Concerns Surrounding Magnetic Resonance Imaging and the Open-Access Scientific Framework in Autism Research

Sources de métadonnées utilisées pour cette référence

OpenAlex Crossref OpenCitations
En savoir plus sur les sources utilisées

Sader, M., Maloney, E., Waiter, G. D., Kerr‐Gaffney, J., Tchanturia, K., Gillespie‐Smith, K., & Duffy, F. (2024). Ethical Complexities and Concerns Surrounding Magnetic Resonance Imaging and the Open-Access Scientific Framework in Autism Research. Autism in Adulthood, 8(4), 554-562. https://doi.org/10.1089/aut.2024.0184

Date de publication: 27/11/2024 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI) Texte intégral

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
7
Auteur·ices de la publication identifié·es comme autistes
1 / 7 (14,3 %)
  1. Michelle Sader
  2. Ellen Maloney *
  3. Gordon D. Waiter
  4. Jess Kerr‐Gaffney
  1. Kate Tchanturia
  2. Karri Gillespie‐Smith
  3. Fiona Duffy

Résumé

La demande visant a rendre les jeux de donnees de recherche finances par des fonds publics accessibles a la communaute de la recherche est croissante. Cependant, de multiples problemes sont associes a l utilisation de donnees accessibles, en particulier au sein de la communaute autiste, ou les personnes ont des reserves comprehensibles quant aux personnes qui accedent a ces donnees, aux objectifs associes a l utilisation de ces donnees et aux raisons pour lesquelles le suivi des personnes qui ont offert leur temps pour fournir leurs donnees est insuffisant. Ces problemes s etendent particulierement a la recherche en imagerie cerebrale, dans laquelle les personnes autistes ont exprime de longue date des preoccupations ethiques quant a la maniere dont cette recherche est realisee et aux raisons pour lesquelles elle l est. Cet article de perspective vise a exposer les preoccupations de la communaute autiste concernant a la fois l imagerie par resonance magnetique (IRM) et le fonctionnement du cadre scientifique en acces libre, en utilisant ces approches comme exemples pour exposer des preoccupations et des obstacles a une recherche ethique a l echelle de la discipline. Ce travail abordera egalement un biais dans la recherche concernant les personnes qui peuvent raisonnablement tolerer une acquisition par IRM en tant que personne autiste et la question de savoir si certaines caracteristiques autistes sont mises en avant de maniere disproportionnee et ou supprimees par ces pratiques de recherche. Enfin, cet article de perspective portera sur les methodes par lesquelles l IRM, la philosophie de la science ouverte et les disciplines generales de recherche peuvent ameliorer leurs pratiques afin de mener une recherche ethique sur l autisme. Resume destine a la communaute : En adoptant ces pratiques recommandees, les chercheurs peuvent mieux respecter l autonomie et les preferences des personnes autistes, ce qui conduit a des resultats de recherche plus inclusifs et ethiques. Cela visera non seulement a beneficier actuellement aux personnes autistes en garantissant que leurs voix soient entendues, mais aussi a ouvrir la voie a des pratiques de recherche plus respectueuses et favorables a l avenir.

There is an increasing demand for publicly funded research datasets to be made available for the research community. However, there are multiple issues associated with the use of accessible data, particularly in the Autistic community, where individuals have understandable reservations as to who is accessing these data, what the associated objectives are regarding the use of these data, and why there is insufficient follow-up to individuals who have offered their time to provide their data. These issues particularly extend toward brain imaging research, in which Autistic individuals have expressed long-standing ethical concerns as to how and why this research is performed. This perspective piece aims to outline concerns from the Autistic community in relation to both magnetic resonance imaging (MRI) and the functionality of the open-access scientific framework, utilizing these approaches as examples to outline discipline-wide concerns and barriers to ethical research. This work will also address a bias in research regarding who can reasonably tolerate an MRI scan as an Autistic person and whether certain Autistic characteristics are being disproportionally highlighted and/or suppressed through these research practices. Lastly, this perspective piece will focus on methods with which MRI, open-science philosophy, and general research disciplines can improve practice to conduct ethical autism research. Community Brief: By adopting these recommended practices, researchers can better respect the autonomy and preferences of Autistic individuals, leading to more inclusive and ethical research outcomes. This will not only aim to currently benefit Autistic individuals by ensuring their voices are heard but also aim to pave the way for more respectful and supportive research practices in the future.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

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 11:31.

Références citées
86
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
7 / 86 (8,1 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
9 / 331 (2,7 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 9 / 63 (14,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 7 / 314 (2,2 %).
Occurrences citées rattachées à la base AutiHub
63 / 331 (19,0 %)
Auteurices cité·es distinct·es rattaché·es : 49 / 314 (15,6 %)
Occurrences rattachées, non identifiées comme autistes
54 / 63 (85,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 54 / 331 (16,3 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 42 / 49 (85,7 %).
2 entrées de bibliographie citée n’ont pas pu être entièrement enrichies à partir des métadonnées DOI.
Crossref: introuvable (1) · DataCite: introuvable (1)
  1. Catherine Westbrook (1994). Handbook of MRI technique .
    Type: Livre OpenAlex: https://openalex.org/W1903033156
    OpenAlex
  2. Flavia Chiarotti , Aldina Venerosi (2020). Epidemiology of Autism Spectrum Disorders: A Review of Worldwide Prevalence Estimates Since 2014 . Brain Sciences, 10(5), 274. MDPI AG.
    Type: Article DOI: 10.3390/brainsci10050274 OpenAlex: https://openalex.org/W3023295472
    Crossref OpenAlex OpenCitations
  3. Nikolaos Stogiannos , Georgia Pavlopoulou , Chris Papadopoulos , Gemma Walsh , Ben Potts , Sarah Moqbel et al. (2023). Strategies to improve the magnetic resonance imaging experience for autistic individuals: a cross-sectional study exploring parents and carers’ experiences . BMC Health Services Research, 23(1), 1375-1375. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12913-023-10333-w OpenAlex: https://openalex.org/W4389429293
    Crossref OpenAlex OpenCitations
  4. Theodora Bloom , Emma Ganley , Margaret Winker (2014). Data Access for the Open Access Literature: PLOS's Data Policy . PLoS Biology, 12(2), e1001797. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pbio.1001797 OpenAlex: https://openalex.org/W1998212328
    Crossref OpenAlex OpenCitations
  5. 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
  6. Julie Rösch , Angelika Mennecke , Michael Knott , Arnd Doerfler , David M. Grodzki (2020). Quiet FLAIR at 7T MRI . Investigative Radiology, 55(11), 722-726. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/rli.0000000000000694 OpenAlex: https://openalex.org/W3033210164
    Crossref OpenAlex OpenCitations
  7. Natasha Susan Mauthner , Odette Parry (2013). Open Access Digital Data Sharing: Principles, Policies and Practices . Social Epistemology, 27(1), 47-67. Informa UK Limited.
    Type: Article DOI: 10.1080/02691728.2012.760663 OpenAlex: https://openalex.org/W2002646810
    Crossref OpenAlex OpenCitations
  8. Roy McConkey (2020). The rise in the numbers of pupils identified by schools with autism spectrum disorder (ASD): a comparison of the four countries in the United Kingdom . Support for Learning, 35(2), 132-143. Wiley.
    Type: Article DOI: 10.1111/1467-9604.12296 OpenAlex: https://openalex.org/W3026412139
    Crossref OpenAlex OpenCitations
  9. Brandon S. Aylward , Diana E. Gal-Szabo , Sharief Taraman (2021). Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder . Journal of Developmental & Behavioral Pediatrics, 42(8), 682-689. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000000996 OpenAlex: https://openalex.org/W3199889683
    Crossref OpenAlex OpenCitations
  10. A. Berger (2002). How does it work?: Magnetic resonance imaging . BMJ, 324(7328), 35-35. BMJ.
    Type: Article DOI: 10.1136/bmj.324.7328.35 OpenAlex: https://openalex.org/W2014218303
    Crossref OpenAlex OpenCitations
  11. Ginny Russell , Sal Stapley , Tamsin Newlove‐Delgado , Andrew Salmon , Rhianna White , Fiona Warren et al. (2022). Time trends in autism diagnosis over 20 years: a UK population‐based cohort study . Journal of Child Psychology and Psychiatry, 63(6), 674-682. Wiley.
    Type: Article DOI: 10.1111/jcpp.13505 OpenAlex: https://openalex.org/W3193769374
    Crossref OpenAlex OpenCitations
  13. Stefan N. Hansen , Diana E. Schendel , Erik T. Parner (2015). Explaining the Increase in the Prevalence of Autism Spectrum Disorders . JAMA Pediatrics, 169(1), 56. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapediatrics.2014.1893 OpenAlex: https://openalex.org/W2059378464
    Crossref OpenAlex OpenCitations
  14. Jana Hutter , Anthony N. Price , Lucilio Cordero‐Grande , Shaihan Malik , Giulio Ferrazzi , Andreia Gaspar et al. (2018). Quiet echo planar imaging for functional and diffusion MRI . Magnetic Resonance in Medicine, 79(3), 1447-1459. Wiley.
    Type: Article DOI: 10.1002/mrm.26810 OpenAlex: https://openalex.org/W2636934219
    Crossref OpenAlex OpenCitations
  15. Éric Fombonne (2001). Is There an Epidemic of Autism? Pediatrics, 107(2), 411-412. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.107.2.411 OpenAlex: https://openalex.org/W2037429287
    Crossref OpenAlex OpenCitations
  16. OECD (2019). Enhancing Access to and Sharing of Data . OECD Publishing.
    Type: Livre DOI: 10.1787/276aaca8-en OpenAlex: https://openalex.org/W4234452525
    Crossref OpenAlex OpenCitations
  17. Mitzi Waltz (2008). Autism = death: The social and medical impact of a catastrophic medical model of autistic spectrum disorders . Popular Narrative Media, 1(1), 13-23. Portico.
    Type: Article DOI: 10.3828/pnm.1.1.4 OpenAlex: https://openalex.org/W2040158861
    Crossref OpenAlex OpenCitations
  18. Daniels SA (2016). Daniels SA,, Celestin O,, Rava J, et al. International Autism Spectrum Disorder Research: Portfolio Analysis Report. The Interagency Autism Coordinating Committee (IACC); 2016. International Autism Spectrum Disorder Research: Portfolio Analysis Report.
    Type: Autre
    Crossref
  19. Mark Walport , Paul Brest (2011). Sharing research data to improve public health . The Lancet, 377(9765), 537-539. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(10)62234-9 OpenAlex: https://openalex.org/W2161172863
    Crossref OpenAlex OpenCitations
  20. Laura C. Erickson , Ashley A. Scott-Van Zeeland , Gavin Hamilton , Alan Lincoln , Beatrice A. Golomb (2012). Brief Report: Approaches to 31P-MRS in Awake, Non-Sedated Children with and without Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 42(6), 1120-1126. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-011-1359-x OpenAlex: https://openalex.org/W2053761037
    Crossref OpenAlex OpenCitations
  21. Jacquiline den Houting * , Elizabeth Pellicano (2019). A Portfolio Analysis of Autism Research Funding in Australia, 2008–2017 . Journal of Autism and Developmental Disorders, 49(11), 4400-4408. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04155-1 OpenAlex: https://openalex.org/W2966196890
    AutiHub · Chercheur·euses autistes Crossref OpenAlex OpenCitations
  22. Abraham Graber (2017). Autism, intellectual disability, and a challenge to our understanding of proxy consent . Medicine, Health Care and Philosophy, 20(2), 229-236. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11019-016-9745-y OpenAlex: https://openalex.org/W2546223226
    Crossref OpenAlex OpenCitations
  24. Lynn Kern Koegel , Robert L. Koegel , Kristen Ashbaugh , Jessica Bradshaw (2014). The importance of early identification and intervention for children with or at risk for autism spectrum disorders . International Journal of Speech-Language Pathology, 16(1), 50-56. Informa UK Limited.
    Type: Article DOI: 10.3109/17549507.2013.861511 OpenAlex: https://openalex.org/W2151822194
    Crossref OpenAlex OpenCitations
  25. Sander Begeer , Saloua El Bouk , Wafaa Boussaid , Mark Meerum Terwogt , Hans M. Koot (2009). Underdiagnosis and Referral Bias of Autism in Ethnic Minorities . Journal of Autism and Developmental Disorders, 39(1), 142-148. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-008-0611-5 OpenAlex: https://openalex.org/W2098566407
    Crossref OpenAlex OpenCitations
  26. (s. d.). Baron-Cohen S. Update on Spectrum 10K. 2021. https://docs.autismresearchcentre.com/Spectrum10K/Statement_Sept_10th_2021.pdf [Last accessed: May 2 2024].
    Type: Autre
    Crossref
  27. D. Weishaupt , V.D. Kochli , B. Marincek , E. E. Kim (2007). How Does MRI Work? An Introduction to the Physics and Function of Magnetic Resonance Imaging . Journal of Nuclear Medicine, 48(11), 1910-1910. Society of Nuclear Medicine.
    Type: Article DOI: 10.2967/jnumed.107.045104 OpenAlex: https://openalex.org/W2103268637
    Crossref OpenAlex OpenCitations
  28. (s. d.). Chapman R. Why Autistic People Are Worried by Spectrum 10K. Psychology Today. 2021. https://www.psychologytoday.com/us/blog/neurodiverse-age/202108/why-autistic-people-are-worried-spectrum-10k
    Type: Autre
    Crossref
  30. Elizabeth Pellicano (2014). Chapter 4. A future made together: new directions in the ethics of autism research . Journal of Research in Special Educational Needs, 14(3), 200-204. Wiley.
    Type: Article DOI: 10.1111/1471-3802.12070_5 OpenAlex: https://openalex.org/W2108837557
    AutiHub · Centre de documentation Crossref OpenAlex OpenCitations
  31. (s. d.). Natri H. Spectrum 10K and the Questionable Past Present and Future of Genetic Autism Research. 2021. doi:10. 13140/RG. 2. 2. 14973. 28642
    Type: Autre
    Crossref
  32. Katharine Sanderson (2021). High-profile autism genetics project paused amid backlash . Nature, 598(7879), 17-18. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/d41586-021-02602-7 OpenAlex: https://openalex.org/W3203258513
    Crossref OpenAlex OpenCitations
  33. Matthew Bennett , Amanda A. Webster , Emma Goodall * , Susannah Rowland (2018). Creating Inclusive Societies for Autistic Individuals: Negating the Impact of the “Autism Can Be Cured” Myth . Dans Life on the Autism Spectrum (pp. 81-102). Springer Singapore.
    Type: Chapitre de livre DOI: 10.1007/978-981-13-3359-0_5 OpenAlex: https://openalex.org/W2907951052
    Crossref OpenAlex OpenCitations
  34. Sue Jordan , Alan Watkins , Mel Storey , Steven J. Allen , Caroline J. Brooks , Iveta Garaiova et al. (2013). Volunteer Bias in Recruitment, Retention, and Blood Sample Donation in a Randomised Controlled Trial Involving Mothers and Their Children at Six Months and Two Years: A Longitudinal Analysis . PLoS ONE, 8(7), e67912. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0067912 OpenAlex: https://openalex.org/W2160693004
    Crossref OpenAlex OpenCitations
  35. Michelle O’Reilly (2020). Autism in the twentieth century: An evolution of a controversial condition . Healthy Minds in the Twentieth Century: In and Beyond the Asylum, 37.
    Type: Autre
    Crossref
  36. James Wesley Carter (2011). MRI: The Basics, 3rd ed. American Journal of Roentgenology, 197(2), W361-W361. American Roentgen Ray Society.
    Type: Article DOI: 10.2214/ajr.11.6487 OpenAlex: https://openalex.org/W2235957883
    OpenAlex OpenCitations
  37. Allison Jack , Kevin A. Pelphrey (2017). Annual Research Review: Understudied populations within the autism spectrum – current trends and future directions in neuroimaging research . Journal of Child Psychology and Psychiatry, 58(4), 411-435. Wiley.
    Type: Article DOI: 10.1111/jcpp.12687 OpenAlex: https://openalex.org/W2577978291
    Crossref OpenAlex OpenCitations
  38. Jennifer C. Sarrett (2016). Biocertification and Neurodiversity: the Role and Implications of Self-Diagnosis in Autistic Communities . Neuroethics, 9(1), 23-36. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s12152-016-9247-x OpenAlex: https://openalex.org/W2252287480
    Crossref OpenAlex OpenCitations
  39. (s. d.). UK Research and Innovation. Guidance on Best Practice in the Management of Research Data. 2018. https://www.ukri.org/publications/guidance-on-best-practice-in-the-management-of-research-data/ [Last accessed: June 19 2018].
    Type: Autre
    Crossref
  40. Marilena M. DeMayo , Izabella Pokorski , Yun J. C. Song , Rinku Thapa , Shrujna Patel , Zahava Ambarchi et al. (2022). The Feasibility of Magnetic Resonance Imaging in a Non-Selective Comprehensive Clinical Trial in Pediatric Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 52(3), 1211-1222. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05028-2 OpenAlex: https://openalex.org/W3158046503
    Crossref OpenAlex OpenCitations
  41. B. Björkman , I. Gimbler Berglund , K. Enskär , M. Faresjö , K. Huus (2017). Peri‐radiographic guidelines for children with autism spectrum disorder: a nationwide survey in Sweden . Child: Care, Health and Development, 43(1), 31-36. Wiley.
    Type: Article DOI: 10.1111/cch.12427 OpenAlex: https://openalex.org/W2546481922
    Crossref OpenAlex OpenCitations
  42. (s. d.). UK Research and Innovation. MRC Data sharing Policy. 2023. https://www.ukri.org/publications/mrc-data-sharing-policy/data-sharing-policy [Last accessed: November 29 2023].
    Type: Autre
    Crossref
  43. Mitzi Waltz (2023). Genetics, Genomics and the Medical Model of Autism . Dans Autism (pp. 203-236). Springer International Publishing.
    Type: Chapitre de livre DOI: 10.1007/978-3-031-31015-7_10 OpenAlex: https://openalex.org/W4383568447
    Crossref OpenAlex OpenCitations
  44. Nikolaos Stogiannos , Sarah Carlier , Jane M Harvey-Lloyd , Andrea Brammer , Barbara Nugent , Karen Cleaver et al. (2022). A systematic review of person-centred adjustments to facilitate magnetic resonance imaging for autistic patients without the use of sedation or anaesthesia . Autism, 26(4), 782-797. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211065542 OpenAlex: https://openalex.org/W4200346426
    Crossref OpenAlex OpenCitations
  45. Jason P Lerch , André J W van der Kouwe , Armin Raznahan , Tomáš Paus , Heidi Johansen-Berg , Karla L Miller et al. (2017). Studying neuroanatomy using MRI . Nature Neuroscience, 20(3), 314-326. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nn.4501 OpenAlex: https://openalex.org/W2589870402
    Crossref OpenAlex OpenCitations
  47. Michelle Sader , Justin H. G. Williams , Gordon D. Waiter (2022). A meta‐analytic investigation of grey matter differences in anorexia nervosa and autism spectrum disorder . European Eating Disorders Review, 30(5), 560-579. Wiley.
    Type: Article DOI: 10.1002/erv.2915 OpenAlex: https://openalex.org/W4229331710
    Crossref OpenAlex OpenCitations
  48. Ingalill Gimbler Berglund , Berit Björkman , Karin Enskär , Maria Faresjö , Karina Huus (2017). Management of Children with Autism Spectrum Disorder in the Anesthesia and Radiographic Context . Journal of Developmental & Behavioral Pediatrics, 38(3), 187-196. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000000432 OpenAlex: https://openalex.org/W2598458554
    Crossref OpenAlex OpenCitations
  50. Patrick Kirkham (2017). ‘The line between intervention and abuse’ – autism and applied behaviour analysis . History of the Human Sciences, 30(2), 107-126. SAGE Publications.
    Type: Article DOI: 10.1177/0952695117702571 OpenAlex: https://openalex.org/W2607044722
    Crossref OpenAlex OpenCitations
  51. Hashemi RH (2011). MRI: The Basics . MRI: The Basics.
    Type: Autre
    Crossref
  52. Manjekah Dunn , Iva Strnadová , Jackie Leach Scully , Jennifer Hansen , Julie Loblinzk , Skie Sarfaraz et al. (2024). Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review . BMJ Quality & Safety, 33(5), 328-339. BMJ.
    Type: Article DOI: 10.1136/bmjqs-2023-016113 OpenAlex: https://openalex.org/W4389504940
    Crossref OpenAlex OpenCitations
  53. Jennifer Elder , Consuelo Kreider , Susan Brasher , Margaret Ansell (2017). Clinical impact of early diagnosis of autism on the prognosis and parent-child relationships . Psychology Research and Behavior Management, Volume 10, 283-292. Informa UK Limited.
    Type: Article DOI: 10.2147/prbm.s117499 OpenAlex: https://openalex.org/W2745968167
    Crossref OpenAlex OpenCitations
  54. Francesco Sardanelli , Marco Alì , Myriam G. Hunink , Nehmat Houssami , Luca M. Sconfienza , Giovanni Di Leo (2018). To share or not to share? Expected pros and cons of data sharing in radiological research . European Radiology, 28(6), 2328-2335. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s00330-017-5165-5 OpenAlex: https://openalex.org/W2791320132
    Crossref OpenAlex OpenCitations
  55. Natasha Malik-Soni , Andrew Shaker , Helen Luck , Anne E. Mullin , Ryan E. Wiley , M. E. Suzanne Lewis et al. (2022). Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood . Pediatric Research, 91(5), 1028-1035. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41390-021-01465-y OpenAlex: https://openalex.org/W3136657450
    Crossref OpenAlex OpenCitations
  56. Terisa P. Gabrielsen , Jeff S. Anderson , Kevin G. Stephenson , Jonathan Beck , Jace B. King , Ryan Kellems et al. (2018). Functional MRI connectivity of children with autism and low verbal and cognitive performance . Molecular Autism, 9(1), 67-67. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-018-0248-y OpenAlex: https://openalex.org/W2906892372
    Crossref OpenAlex OpenCitations
  57. Faranak Rafiee , Roya Rezvani Habibabadi , Mina Motaghi , David M. Yousem , Ilyssa J. Yousem (2022). Brain MRI in Autism Spectrum Disorder: Narrative Review and Recent Advances . Journal of Magnetic Resonance Imaging, 55(6), 1613-1624. Wiley.
    Type: Article DOI: 10.1002/jmri.27949 OpenAlex: https://openalex.org/W3202979584
    Crossref OpenAlex OpenCitations
  58. Heini M Natri * (2021). Spectrum 10K and The Questionable Past, Present, and Future of Genetic Autism Research . Unpublished.
    Type: Article DOI: 10.13140/rg.2.2.14973.28642 OpenAlex: https://openalex.org/W6941435904
    OpenAlex OpenCitations
  59. Marwan Habiba (2019). Controversies in applying the Abortion Act to Down syndrome . Clinical Ethics, 14(2), 57-62. SAGE Publications.
    Type: Article DOI: 10.1177/1477750919845085 OpenAlex: https://openalex.org/W2936914677
    Crossref OpenAlex OpenCitations
  60. Maria Strömberg , Lina Liman , Peter Bang , Kajsa Igelström (2022). Experiences of Sensory Overload and Communication Barriers by Autistic Adults in Health Care Settings . Autism in Adulthood, 4(1), 66-75. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0074 OpenAlex: https://openalex.org/W3205684935
    Crossref OpenAlex OpenCitations
  61. Emmanuel Peng Kiat Pua , Sarah Barton , Katrina Williams , Jeffrey M Craig , Marc L Seal (2020). Individualised MRI training for paediatric neuroimaging: A child-focused approach . Developmental Cognitive Neuroscience, 41, 100750. Elsevier BV.
    Type: Article DOI: 10.1016/j.dcn.2019.100750 OpenAlex: https://openalex.org/W2994965349
    Crossref OpenAlex OpenCitations
  62. Westbrook C (2014). Handbook of MRI Technique . Handbook of MRI Technique.
    Type: Autre
    Crossref
  63. Rodríguez Mega E (2023). “The best way to get it right is to listen to us”—autistic people argue for a stronger voice in research . Nature, 617(7960), 238.
    Type: Autre
    Crossref
  64. Steven J. Taylor , Alice Brumby (2020). Healthy Minds in the Twentieth Century . Springer International Publishing.
    Type: Livre DOI: 10.1007/978-3-030-27275-3 OpenAlex: https://openalex.org/W3027988882
    OpenAlex
  65. (s. d.). Harmon A. How About Not “Curing” Us Some Autistics Are Pleading. The New York Times. 2004. https://www.nytimes.com/2004/12/20/health/how-about-not-curing-us-some-autistics-are-pleading.html [Last accessed: December 20 2004].
    Type: Autre
    Crossref
  66. M. Ariel Cascio , Jonathan A. Weiss , Éric Racine , and the Autism Research Ethics Task Force (2020). Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities . Autism, 24(7), 1676-1690. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320918763 OpenAlex: https://openalex.org/W3036990083
    Crossref OpenAlex OpenCitations
  67. Kenichi Yamada , Yuji Suzuki , Satoshi Ueki , Kosuke Itoh , Masaki Watanabe , Kiyotaka Suzuki et al. (2020). Participant-driven Simulation Protocol With a Mock Scanner for Pediatric Magnetic Resonance Neuroimaging Preparation Without Sedation . Clinical Simulation in Nursing, 47, 40-47. Elsevier BV.
    Type: Article DOI: 10.1016/j.ecns.2020.07.002 OpenAlex: https://openalex.org/W3080713285
    Crossref OpenAlex OpenCitations
  68. Zhuo Li , Dimitri Chubinidze , Philippa Croft , Jessica Webb , Amanda Sarpong , Elisa Zesch et al. (2025). “Don’t talk to me like I am an illness”: exploring patients’ needs using the communication passport in an eating disorder service . neuropsychiatrie, 39(1), 28-35. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40211-024-00501-7 OpenAlex: https://openalex.org/W4400592226
    Crossref OpenAlex OpenCitations
  69. Teresa Guallart-Naval , José M. Algarín , Rubén Pellicer-Guridi , Fernando Galve , Yolanda Vives-Gilabert , Rubén Bosch et al. (2022). Portable magnetic resonance imaging of patients indoors, outdoors and at home . Scientific Reports, 12(1). Springer Science and Business Media LLC.
    Type: Prépublication DOI: 10.1038/s41598-022-17472-w OpenAlex: https://openalex.org/W4226003016
    Crossref OpenAlex OpenCitations
  70. Kaustubh Supekar , Carlo de los Angeles , Srikanth Ryali , Kaidi Cao , Tengyu Ma , Vinod Menon (2022). Deep learning identifies robust gender differences in functional brain organization and their dissociable links to clinical symptoms in autism . The British Journal of Psychiatry, 220(4), 202-209. Royal College of Psychiatrists.
    Type: Article DOI: 10.1192/bjp.2022.13 OpenAlex: https://openalex.org/W4213038917
    Crossref OpenAlex OpenCitations
  71. Kaie Habata , Yongjeon Cheong , Taku Kamiya , Daichi Shiotsu , Ichiro M. Omori , Hidehiko Okazawa et al. (2021). Relationship between sensory characteristics and cortical thickness/volume in autism spectrum disorders . Translational Psychiatry, 11(1), 616-616. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41398-021-01743-7 OpenAlex: https://openalex.org/W4200407108
    Crossref OpenAlex OpenCitations
  72. Zeyu Zhou , Abdulrahman Alfayad , Tzu Cheng Chao , James G. Pipe (2023). Acoustic noise reduction for spiral MRI by gradient derating . Magnetic Resonance in Medicine, 90(4), 1547-1554. Wiley.
    Type: Article DOI: 10.1002/mrm.29747 OpenAlex: https://openalex.org/W4381598148
    Crossref OpenAlex OpenCitations
  73. Emiliano Rodríguez Mega (2023). ‘I am not a broken version of normal’ — autistic people argue for a stronger voice in research . Nature, 617(7960), 238-241. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/d41586-023-01549-1 OpenAlex: https://openalex.org/W4376114516
    OpenAlex OpenCitations
  74. (s. d.). GOV. UK. Data Sharing Governance Framework. GOV. UK. 2022. https://www.gov.uk/government/publications/data-sharing-governance-framework/data-sharing-governance-framework
    Type: Autre
    Crossref
  75. (s. d.). GOV. UK. Data Protection Act 2018. Legislation.gov.uk. 2018. https://www.legislation.gov.uk/ukpga/2018/12/contents/enacted
    Type: Autre
    Crossref
  76. Bettina Weigel , Jana F. Tegethoff , Sarah D. Grieder , Bryce Lim , Bhuvaneswari Nagarajan , Yu-Chao Liu et al. (2023). MYT1L haploinsufficiency in human neurons and mice causes autism-associated phenotypes that can be reversed by genetic and pharmacologic intervention . Molecular Psychiatry, 28(5), 2122-2135. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41380-023-01959-7 OpenAlex: https://openalex.org/W4320481085
    Crossref OpenAlex OpenCitations
  77. (s. d.). GDPR. General Data Protection Regulation (GDPR). 2018. https://gdpr-info.eu/
    Type: Autre
    Crossref
  78. Bell J (2019). Balancing data subjects’ rights and public interest research: Examining the interplay between UK law, EU human rights law and the GDPR . Lexxion: the Legal Publisher, 5(1).
    Type: Autre
    Crossref
  80. (s. d.). Very Well Health. Autistic People Raise Concerns About Spectrum 10K Study. Verywell Health. 2021. https://www.verywellhealth.com/why-autistic-people-are-against-spectrum-10k-5199849
    Type: Autre
    Crossref
  81. (s. d.). Baron-Cohen S. Genetic Studies Intend to Help People with Autism not Wipe them out. New Scientist; 2018. https://www.newscientist.com/article/2179104-genetic-studies-intend-to-help-people-with-autism-not-wipe-them-out/
    Type: Autre
    Crossref
  82. Julia Sinclair (1993). Our Voice, 1 (3) . Our Voice, 1 (3).
    Type: Autre
    Crossref
  83. (s. d.). Don’t Screen Us Out. 84% increase in Abortions where baby had Down’s Syndrome in Scotland Disability group call on Scottish Government to Undertake urgent Inquiry. dontscreenusout.org. 2023. https://dontscreenusout.org/press-release-84-increase-in-abortions-where-baby-had-downs-syndrome-in-scotland-disability-group-call-on-scottish-government-to-undertake-urgent-inquiry/ [Last accessed: May 31 2023].
    Type: Autre
    Crossref
  84. (s. d.). Public Health Scotland. Termination of Pregnancy Statistics - Year ending December 2022. Publications - Public Health Scotland; 2023. https://publichealthscotland.scot/publications/termination-of-pregnancy-statistics/termination-of-pregnancy-statistics-year-ending-december-2022
    Type: Autre
    Crossref
  85. (s. d.). Quinones J Lajka A. “What Kind of Society do you want to live in?”: Inside the Country where Down Syndrome is Disappearing. Cbsnews.com. 2017. https://www.cbsnews.com/news/down-syndrome-iceland/ [Last accessed: August 14 2017].
    Type: Autre
    Crossref
  86. Hayes AL (2018). Autism spectrum disorder: Patient care strategies for medical imaging . Radiol Technol, 90(1), 31.
    Type: Autre
    Crossref