Enhancing the Impact of Genomics Research in Autism through Integration of Research Results into Routine Care Pathways—A Case Series
| Autor: | Mayada Elsabbagh, Lara Stern, Daniela Buhas, Emily Kirby, Iskra Peltekova, Afiqah Yusuf |
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| Jazyk: | angličtina |
| Rok vydání: | 2021 |
| Předmět: |
0301 basic medicine
return of genetic research results business.industry Process (engineering) Applied psychology Medicine (miscellaneous) Genomics autism spectrum disorder clinical care pathways 030105 genetics & heredity medicine.disease Article 03 medical and health sciences 030104 developmental biology Autism spectrum disorder Health care neurodevelopmental conditions medicine Autism Medicine Clinical care business Psychology Routine care |
| Zdroj: | Journal of Personalized Medicine, Vol 11, Iss 755, p 755 (2021) Journal of Personalized Medicine Volume 11 Issue 8 |
| ISSN: | 2075-4426 |
| Popis: | The return of genetic results (RoR) to participants, enrolled as children, in autism research remains a complex process. Existing recommendations offer limited guidance on the use of genetic research results for clinical care. We highlight current challenges with RoR and illustrate how the use of a guiding framework drawn from existing literature facilitates RoR and the clinical integration of genetic research results. We report a case series (n = 16) involving the return of genetic results to participants in large genomics studies in Autism Spectrum Disorders (ASD). We outline the framework that guided RoR and facilitated integration into clinical care pathways. We highlight specific cases to illustrate challenges that were, or could have been, resolved through this framework. The case series demonstrates the ethical, clinical and practical difficulties of RoR in ASD genomic studies for participants enrolled as children. Challenges were resolved using pre-established framework to guide RoR and incorporate research genetic results into clinical care. We suggest that optimal use of genetic research results relies on their integration into individualized care pathways for participants. We offer a framework that attempts to bridge the gap between research and healthcare in ASD. |
| Databáze: | OpenAIRE |
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