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

  • Read more about Questionnaire: “Data in question. ELSI Challenges in Biobank-based Research”

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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ELSIhub is financially supported by the National Human Genome Research Institute at the National Institutes of Health (U24HG010733). It is managed at Stanford and Columbia Universities in partnership with the Hastings Center and Case Western Reserve University.

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