What do parents think about sharing their child’s research data?

AUTHORS: Kiran Pohar Manhas, Shawn X Dodd, Stacey Page, Nicole Letourneau, Xinjie Cui, and Suzanne Tough

 

Many funders, institutions and journals now insist that researchers share data from completed studies to enable new research questions to be answered, especially if the research was publicly-funded [1-5]. Numerous data platforms have emerged locally and worldwide to facilitate this sharing, such as biobanks for precision health and data repositories for reuse of clinical specimens, research and/or administrative data. SAGE, short for Secondary Analysis to Generate Evidence, is one such data platform.

While sharing data is understood to offer great opportunities, it also presents the following concerns:

  • Privacy (e.g., who can see the information about people)
  • Consent (e.g., how often and in what way do we ask people for permission to reuse their information)
  • Governance and access (e.g., how do we decide who can access information for reuse and how information is most securely stored)
  • Communication (e.g., how often and in what form do we communicate findings and changes to the original participants in the long-term)

To adequately recognize and address these concerns, SAGE commissioned our research team to consult with stakeholders to better understand how to ensure the benefits of data sharing do not outweigh their concerns. Key stakeholders include the data donors (research participants)..

During SAGE development, two Albertan longitudinal birth cohort studies collected rich datasets that would be deposited for sharing and reuse: All Our Families (AOF) and Alberta Pregnancy Outcomes and Nutrition (APrON). Together, these cohort studies recruited pregnant women beginning at 14 weeks gestation in 2008, and have continued with 9 collection time points over the subsequent years. Together, cohort participants (approximately 6400 people) provided information on their demographics, lifestyle, mental, psychosocial and physical health, pregnancy history, health service utilization, quality of life, and breastfeeding. Detailed information on AOF and APrON (both of which have deposited data in SAGE currently) is described elsewhere [6-8].

We wanted to understand the perspectives of parents who participated in these cohorts. We especially wanted to understand how they viewed privacy and governance issues related to data sharing and reuse. We were particularly interested in identifying how parents felt about sharing their own and their child’s non-biological research data. The health- and development- related data collected during a cohort study can be quite sensitive, but it is distinct from biological and tissue data, which most of the current literature on stakeholder engagement in data sharing emphasizes. Biological and non-biological data diverge in their nature, collection, storage, research potential and implications [9, 10].

We used a web-based survey, sent by personalized email to consenting AOF and APrON parents. They had 14 days to complete the survey if they wished to participate, and they received reminder emails on day 3 and 11 (AOF parents also got a phone call reminder on day 7 of the 14 day window). Interested parents who completed the survey could share their email in order to enter a draw for an iPod Touch.

We had 346 parent participants complete the survey (a response rate of 60.8%) in September 2014. Here are some of the highlights:

  • 4% of parents reported that they felt research benefits society and wanted to help advance science.
  • The most important benefits of data sharing to parents were the new research questions possible (42.9%) and the cost and time savings for researchers and funders (40.3%).
  • Only 2.9% of parents felt the greatest benefit of data sharing was the reduced time and effort burden on research participants.
  • Parents’ primary concern was ensuring appropriate re-use of data (61.5%), considered much more important than concerns over privacy (36.3%).
  • Appropriate re-use included only permitting access to data on a case-by-case basis (i.e. for 1 project at a time).
  • Appropriate re-use included limiting access to researchers with more-trusted affiliations like those from recognized universities (97.4% willing to share). Other affiliations were less palatable with industry (15.9% willing), government (41.6% willing) and not-for-profit agencies (34.1% willing).

Parents considered pediatric data more sensitive than adult data and expressed significantly more reluctance towards sharing child identifiers compared to their own. In summary, parents stressed the importance of the processes and procedures in place (i.e. governance strategies)  to sustain long-term, appropriate and secure access to valuable data assets, which aligns with previous research findings that it is governance not privacy or consent that is the issue for developing sustainable and trust-worthy data-sharing platforms [9, 11, 12].

We presented these research findings at the DATA 2017: the 6th International Conference on Data Science, Technology and Applications in Madrid, Spain (July 24-26, 2017). Our full research paper is available online, as are all of the research papers presented at this data focused conference.

 

REFERENCES

  1. Social Sciences and Humanities Research Council: Data Release and Resource Sharing Policy. In.; 2008.
  2. Medical Research Council: MRC policy and guidance on sharing of research data from population and patient studies. In.; 2011.
  3. NIH data sharing policy and implementation guidance
  4. Canadian Institutes of Health Research, Natural Sciences & Engineering Research Council, Social Sciences and Humanities Research Council: Tri-Council Policy Statement: Ethical Conduct of Research Involving Humans. 2010.
  5. Office of the Information and Privacy Commissioner of British Columbia: Report of the roundtable discussion on access to data for health research. In.; 2012.
  6. Kaplan BJ, Giesbrecht GF, Leung BM, Field CJ, Dewey D, Bell RC, Manca DP, O’Beirne M, Johnston DW, Pop VJ et al: The Alberta Pregnancy Outcomes and Nutrition (APrON) cohort study: rationale and methods. Maternal & child nutrition 2014, 10(1):44-60.
  7. Leung BM, McDonald SW, Kaplan BJ, Giesbrecht GF, Tough SC: Comparison of sample characteristics in two pregnancy cohorts: community-based versus population-based recruitment methods. BMC medical research methodology 2013, 13:149.
  8. McDonald SW, Lyon AW, Benzies KM, McNeil DA, Lye SJ, Dolan SM, Pennell CE, Bocking AD, Tough SC: The All Our Babies pregnancy cohort: design, methods, and participant characteristics. BMC pregnancy and childbirth 2013, 13 Suppl 1:S2.
  9. Laurie G: Reflexive governance in biobanking: on the value of policy led approaches and the need to recognise the limits of law. Human genetics 2011, 130(3):347-356.
  10. Brakewood B, Poldrack RA: The ethics of secondary data analysis: considering the application of Belmont principles to the sharing of neuroimaging data. NeuroImage 2013, 82:671-676.
  11. O’Doherty KC, Burgess MM, Edwards K, Gallagher RP, Hawkins AK, Kaye J, McCaffrey V, Winickoff DE: From consent to institutions: designing adaptive governance for genomic biobanks. Social science & medicine (1982) 2011, 73(3):367-374.
  12. Audrey S, Brown L, Campbell R, Boyd A, Macleod J: Young people’s views about consenting to data linkage: findings from the PEARL qualitative study. BMC medical research methodology 2016, 16:34.