Survey

Questionnaire: “Data in question. ELSI Challenges in Biobank-based Research”

Author(s):

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.

Year:

2019

Goisef and colleagues developed a survey for professionals working in research-based biobanks in Europe that assess their satisfaction with current ELSI-related procedures. Topics assessed include: collaboration and data sharing with industrial partners, secondary uses of participant data, and recontacting participants. There are 25 questions in this survey.

Research Population:

Researchers

Citation:

Goisauf, M., Martin, G., Bentzen, H. B., Budin-Ljøsne, I., Ursin, L., Durnová, A., Leitsalu, L., Smith, K., Casati, S., Lavitrano, M., Mascalzoni, D., Boeckhout, M., Mayrhofer, M. Th. (2019) Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research. PLoS ONE 14(9): e0221496.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0221496#sec018

Contact:

[email protected]

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