Global Perspectives on Returning Genetic Research Results in Parkinson Disease
Given the differences in resources and training for RoR, as well as ethical and regulatory considerations, tailored approaches are required to ensure equitable access to RoR. Several identified strategies to enhance RoR practices include improving informed consent processes, increasing capacity for genetic counselling including providing counselling toolkits for common genetic variants, broadening access to sustainable clinically accredited testing, building logistical infrastructure for RoR processes, and continuing public and health care education efforts on the important role of genetics in PD.
Authors
- J Solle (ORCID: https://orcid.org/0000-0002-9941-4830)
- Azlina Ahmad (ORCID: https://orcid.org/0000-0002-9000-793X)
- Christine Klein (ORCID: https://orcid.org/0000-0003-2102-3431)
- Paula Saffie Awad (ORCID: https://orcid.org/0000-0002-8056-365X)
- Roy N. Alcalay (ORCID: https://orcid.org/0000-0002-5717-4875)
- Claire Wegel
- Mary B. Makarious (ORCID: https://orcid.org/0000-0002-7978-1051)
- Shen‐Yang Lim (ORCID: https://orcid.org/0000-0002-6942-2522)
- Alastair John Noyce (ORCID: https://orcid.org/0000-0003-3027-5497)
- Sumit Dey
- Artur Francisco Schumacher Schuh (ORCID: https://orcid.org/0000-0002-8722-0908)
- Ai Huey Tan (ORCID: https://orcid.org/0000-0002-2979-3839)
- Kishore Raj Kumar (ORCID: https://orcid.org/0000-0003-3482-6962)
- Huw R. Morris (ORCID: https://orcid.org/0000-0002-5473-3774)
- Brian P. Fiske (ORCID: https://orcid.org/0000-0001-5891-4268)
- María Teresa Periñán (ORCID: https://orcid.org/0000-0001-7412-7440)
- Harutyun Madoev (ORCID: https://orcid.org/0000-0001-5360-5319)
- Maria Leila Doquenia
Institutions
- Universidade Federal do Rio Grande do Sul (BR)
- Hospital de Clínicas de Porto Alegre (BR)
- Indiana University – Purdue University Indianapolis (US)
- University of Lübeck (DE)
Publication Details
- Journal
- Neurology Genetics
- Published
- 2024-12-01
- DOI
- https://doi.org/10.1212/nxg.0000000000200213
- Citations
- 8
- Primary Topic
- Lysosomal Storage Disorders Research
- Type
- article
- Field-Weighted Citation Impact
- 2.61