How should researchers handle 'data sharing' or 'future use of identifiable data' in consent forms?

How should researchers handle 'data sharing' or 'future use of identifiable data' in consent forms?

• A. Include information about future use and sharing; obtain consent for future use or ensure data are de-identified; use data use agreements for sharing.
• B. Prohibit any future use of data under all circumstances.
• C. Allow future use without consent if anonymized.
• D. Delete data after initial study.

Answer: (A)

The idea behind this item is that consent forms should clearly address what happens to participants’ data after the initial study, including any future use and sharing, while protecting privacy. The best approach is to include information about potential future uses and data sharing, obtain consent for those future uses, or, if consent for future use isn’t possible, ensure that data are de-identified before sharing. Using data use agreements with any researchers who access the data helps specify who can use the data, for what purposes, and how privacy protections are maintained. This approach respects participant autonomy and privacy while enabling valuable secondary research. Other approaches are too restrictive or insufficient. Prohibiting any future use is impractical and unnecessarily limits scientific progress. Allowing future use without consent even if data could be identifying is inappropriate, as identifiable information requires appropriate consent or robust safeguards. Deleting data after the initial study prevents potentially beneficial secondary research that could improve understanding or public health.

The idea behind this item is that consent forms should clearly address what happens to participants’ data after the initial study, including any future use and sharing, while protecting privacy. The best approach is to include information about potential future uses and data sharing, obtain consent for those future uses, or, if consent for future use isn’t possible, ensure that data are de-identified before sharing. Using data use agreements with any researchers who access the data helps specify who can use the data, for what purposes, and how privacy protections are maintained. This approach respects participant autonomy and privacy while enabling valuable secondary research.

Other approaches are too restrictive or insufficient. Prohibiting any future use is impractical and unnecessarily limits scientific progress. Allowing future use without consent even if data could be identifying is inappropriate, as identifiable information requires appropriate consent or robust safeguards. Deleting data after the initial study prevents potentially beneficial secondary research that could improve understanding or public health.