Document Type
Survey
Title

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

Author(s):

Author Name(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:

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.

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Research Population
Researchers

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