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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Bibliographic Details
Main Author: Amorim, Mariana (author)
Other Authors: Silva, Susana (author), Machado, Helena (author), Teles, Elisa Leão (author), Baptista, Maria João (author), Maia, Tiago (author), Nwebonyi, Ngozi (author), de Freitas, Cláudia (author)
Format: article
Language:eng
Published: 2022
Subjects:
rare diseases
data sharing
genomics research
risks
data governance
public views
Ciências Médicas::Ciências da Saúde
Science & Technology
Online Access:https://hdl.handle.net/1822/80327
Country:Portugal
Oai:oai:repositorium.sdum.uminho.pt:1822/80327

Internet

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

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