Idioma:

Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research

Goisauf, Melanie ; Martin, Gillian ; Bentzen, Heidi Beate ; Budin-Ljøsne, Isabelle ; Ursin, Lars ; Durnová, Anna ; Leitsalu, Liis ; Smith, Katharine ; Casati, Sara ; Lavitrano, Marialuisa ; Mascalzoni, Deborah ; Boeckhout, Martin ; Mayrhofer, Michaela Th Sane, Renuka

PloS one, 2019-09, Vol.14 (9), p.e0221496 [Periódico revisado por pares]

United States: Public Library of Science

Texto completo disponível

Citações Citado por

Enviar para

Título:
Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research
Autor: Goisauf, Melanie ; Martin, Gillian ; Bentzen, Heidi Beate ; Budin-Ljøsne, Isabelle ; Ursin, Lars ; Durnová, Anna ; Leitsalu, Liis ; Smith, Katharine ; Casati, Sara ; Lavitrano, Marialuisa ; Mascalzoni, Deborah ; Boeckhout, Martin ; Mayrhofer, Michaela Th
Sane, Renuka
Assuntos: Attitudes ; Biological Specimen Banks ; Biology and Life Sciences ; Biomedical research ; Biomedical Research - ethics ; Biomedical Research - legislation & jurisprudence ; Communication ; Computer and Information Sciences ; Consent ; Data processing ; Ethics ; Europe ; Genetic research ; Genomics ; Humans ; Informed consent ; Informed Consent - ethics ; Internet ; Medical disciplines: 700 ; Medical research ; Medicine ; Medicine and Health Sciences ; Medisinske Fag: 700 ; Partnerships ; Planning ; Polls & surveys ; Public health ; Public-private sector cooperation ; Research and Analysis Methods ; Researchers ; Social Sciences ; Surveys ; Surveys and Questionnaires ; Technology application ; Transformations ; VDP
É parte de: PloS one, 2019-09, Vol.14 (9), p.e0221496
Notas: ObjectType-Article-1
SourceType-Scholarly Journals-1
ObjectType-Feature-2
content type line 23
PLOS ONE
Competing Interests: The authors have declared that no competing interests exist.
Descrição: Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective of the professionals working in management or scientific roles in research-based biobanks, who have an important impact on shaping these transformations. In particular, it highlights that recent advances in molecular medicine and genomic research have raised a range of ethical, legal and societal implications (ELSI) related to biobank-based research, impacting directly on regulations and local practices of informed consent (IC), private-public partnerships (PPPs), and engagement of participants. In our study, we investigate the ways that these concerns influence biobanking practices and assess the level of satisfaction of the cross-national biobanking research communities with the ELSI related procedures that are currently in place. We conducted an online survey among biobankers and researchers to investigate secondary use of data, informing and/or re-contacting participants, sharing of data with third parties from industry, participant engagement, and collaboration with industrial partners. Findings highlight the need for a more inclusive and transparent biobanking practice where biobanks are seen in a more active role in providing information and communicating with participants; the need to improve the current IC procedures and the role of biobanks in sharing of samples and data with industry partners and different countries, and the need for practical, tangible and hands-on ethical and legal guidance.
Editor: United States: Public Library of Science
Idioma: Inglês

Links

Voltar para lista de resultados

Anterior Resultado 5 Avançar Ir para próxima página

Realização: Logos de Redes Sociais:

Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research

Goisauf, Melanie ; Martin, Gillian ; Bentzen, Heidi Beate ; Budin-Ljøsne, Isabelle ; Ursin, Lars ; Durnová, Anna ; Leitsalu, Liis ; Smith, Katharine ; Casati, Sara ; Lavitrano, Marialuisa ; Mascalzoni, Deborah ; Boeckhout, Martin ; Mayrhofer, Michaela Th Sane, Renuka

United States: Public Library of Science

Buscando em bases de dados remotas. Favor aguardar.