Advertisement

Wider Research Applications of Dynamic Consent

  • Arianna Schuler ScottEmail author
  • Michael Goldsmith
  • Harriet Teare
Chapter
Part of the IFIP Advances in Information and Communication Technology book series (IFIPAICT, volume 547)

Abstract

As research processes change due to technological developments in how data is collected, stored and used, so must consent methods. Dynamic consent is an online mechanism allowing research participants to revisit consent decisions they have made about how their data is used. Emerging from bio-banking where research data is derived from biological samples, dynamic consent has been designed to address problems with participant engagement and oversight. Through discussion that emerged during a workshop run at the IFIP 2018 Summer School, this paper explores wider research problems could be addressed by dynamic consent. Emergent themes of research design, expectation management and trust suggested overarching research problems which could be addressed with a longer term view of how research data is used, even if that use is unknown at the point of collection. We posit that the existing model of dynamic consent offers a practical research approach outside of bio-banking.

Keywords

Consent Engagement Revocation Trust Digital rights Research practice Data use Cybersecurity 

References

  1. 1.
    Braun, V., Clarke, V.: Using thematic analysis in psychology. Qual. Res. Psychol. 3(2), 77–101 (2006).  https://doi.org/10.1191/1478088706qp063oaCrossRefGoogle Scholar
  2. 2.
    Dixon, W., et al.: A dynamic model of patient consent to sharing of medical record data. bmj 348, g1294 (2014).  https://doi.org/10.1136/bmj.g1294CrossRefGoogle Scholar
  3. 3.
    Dixon-Woods, M., Ashcroft, R.: Regulation and the social licence for medical research. Med. Health Care Philos. 11(4), 381–391 (2008).  https://doi.org/10.1007/s11019-008-9152-0CrossRefGoogle Scholar
  4. 4.
    Hoeyer, K., Olofsson, B.O., Mjörndal, T., Lynöe, T.: Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand. J. Public Health 32(3), 224–229 (2004).  https://doi.org/10.1080/14034940310019506CrossRefGoogle Scholar
  5. 5.
    Javaid, M., et al.: The RUDY study platform – a novel approach to patient driven research in rare musculoskeletal diseases. Orphanet J. Rare Dis. 11, (2016).  https://doi.org/10.1186/s13023-016-0528-6
  6. 6.
    Kaye, J., Whitley, E., Lund, D., Morrison, M., Teare, H., Melham, K.: Dynamic consent: a patient interface for twenty-first century research networks. Eur. J. Hum. Genet. 23, 141 (2015).  https://doi.org/10.1038/ejhg.2014.71CrossRefGoogle Scholar
  7. 7.
    O’Neill, O.: Some limits of informed consent. J. Med. Ethics. 29, 4–7 (2003).  https://doi.org/10.1136/jme.29.1.4CrossRefGoogle Scholar
  8. 8.
    European Parliament: Regulation (EU) 2016 of the European Parliament and of the Council, on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) (2016)Google Scholar
  9. 9.
    Simon, C., et al.: Active choice but not too active: public perspectives on biobank consent models. Genet. Med. 13(9), 821–831 (2011).  https://doi.org/10.1097/GIM.0b013e31821d2f88CrossRefGoogle Scholar
  10. 10.
    Teare, H., et al.: The RUDY study: using digital technologies to enable a research partnership. Eur. J. Hum. Genet. 25(7), 816–822 (2017).  https://doi.org/10.1038/ejhg.2017.57CrossRefGoogle Scholar
  11. 11.
    Teare, H., Morrison, M., Whitley, E., Kaye, E., Kaye, J.: Towards ‘Engagement 2.0’: insights from a study of dynamic consent with biobank participants. Digit. Health. 1, 1–13 (2015). https://doi.org/10.1177/2055207615605644CrossRefGoogle Scholar
  12. 12.
    The Stationary Office: Data Protection Act 2018, chapter 12 (2018). http://www.legislation.gov.uk/ukpga/2018/12/pdfs/ukpga20180012en:pdf

Copyright information

© IFIP International Federation for Information Processing 2019

Authors and Affiliations

  • Arianna Schuler Scott
    • 1
    Email author
  • Michael Goldsmith
    • 1
  • Harriet Teare
    • 2
  1. 1.Department of Computer ScienceUniversity of OxfordOxfordUK
  2. 2.Centre for Health, Law and Emerging Technologies, Nuffield Department for Population HealthUniversity of OxfordOxfordUK

Personalised recommendations