Last updated: May 15, 2018

Future use of samples

Future uses or sharing samples and data may have considerable benefits for the future health of the participant and in establishing genomics. However, the implications of the future use of samples and data needs to be considered at the outset to:

    • Detail future use as much as possible including future research and governance of data that takes the following into account [1]:
      • Privacy risks persist throughout the participant’s lifetime
      • As with clinical genetic and genomic testing there are limits to anonymity and confidentiality of data
      • Sharing of samples and data is often broad including data transfer to third parties
      • Implications for their family
      • Potential for harm to their community groups
    • Respect the participants’ rights to withdraw consent and samples and much as possible inform participants that withdrawal once data is disseminated is limited
    • Consider withdrawal proposals for data collection and storage
    • Create data release policies to:
      • Balance the benefits of access with privacy and implications for informed consent (including resourcing),
      • Manage any intellectual property considerations for the study.

For more information see - Making yourself data capable and Consent and considerations for participants

[1] Knoppers B.M. (2014) Framework for responsible sharing of genomic and health-related data. HUGO J. 2014;8:3.