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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...
Autores principales: | Amorim, Mariana, Silva, Susana, Machado, Helena, Teles, Elisa Leão, Baptista, Maria João, Maia, Tiago, Nwebonyi, Ngozi, de Freitas, Cláudia |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2022
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Materias: | |
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 |
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