Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals

Assessing public and patients’ expectations and concerns about genomic data sharing is essential to promote adequate data governance and engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 rare disease patients, 478 informal carers and 63 healthcare pr...

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Detalles Bibliográficos
Autores principales: Amorim, Mariana, Silva, Susana, Machado, Helena, Teles, Elisa Leão, Baptista, Maria João, Maia, Tiago, Nwebonyi, Ngozi, de Freitas, Cláudia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9319916/
https://www.ncbi.nlm.nih.gov/pubmed/35886636
http://dx.doi.org/10.3390/ijerph19148788

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9319916/
https://www.ncbi.nlm.nih.gov/pubmed/35886636
http://dx.doi.org/10.3390/ijerph19148788

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