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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Detalhes bibliográficos
Autor principal: Amorim, Mariana (author)
Outros Autores: Silva, Susana (author), Machado, Helena (author), Teles, Elisa Leão (author), Baptista, Maria João (author), Maia, Tiago (author), Nwebonyi, Ngozi (author), de Freitas, Cláudia (author)
Formato: article
Idioma:eng
Publicado em: 2022
Assuntos:
rare diseases
data sharing
genomics research
risks
data governance
public views
Ciências Médicas::Ciências da Saúde
Science & Technology
Texto completo:https://hdl.handle.net/1822/80327
País:Portugal
Oai:oai:repositorium.sdum.uminho.pt:1822/80327

Texto Completo

https://hdl.handle.net/1822/80327

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