The UK hosts many of the world’s longest running prospective longitudinal birth cohort studies. These projects make repeated observations of their participants and use this data to explore health outcomes and mortality.

An alternative method for data collection is record linkage; the linking together of electronic health and administrative records. Applied nationally, this could provide unrivalled opportunities to follow a large number of people in perpetuity.

However, public attitudes to the use of data and samples in research are currently unclear.

Here we report on an event at which we collected attitudes towards recent opportunities and controversies within health data science.


The event was attended by ~250 individuals (cohort members and their guests), who had been invited through the offices of their participating cohort studies. Attendees heard talks describing key research results and participated in 15 multiple-choice questions using interactive voting pads.


Our participants showed a high level of trust in researchers and doctors, but less trust in commercial companies. They supported the idea of researchers using information from both neonatal blood spots (Guthrie spots) and from health records.

Participants said they would be willing to wear devices like a “fit-bit” and to undergo a brain scan that might predict later mental illness. However, they were less willing to change an aspect of their lifestyle or take a new drug for research purposes.

They were very keen to encourage others to take part in research; whether that be offering the opportunity to pregnant mothers or indeed extending invitations to their own children and grandchildren


Our participants were broadly supportive of research access to data and samples, albeit less supportive when commercial interests are involved.

Public engagement events that facilitate two-way interactions can influence and support future research and public engagement efforts.

Ethical permission for this work was granted by The Psychology Research Ethics Committee (PREC) at the University of Edinburgh (Ref No: 327-1718/3). No identifying data were collected from participating individuals.

Videos are publicly available on the CCACE YouTube Channel:

Data Citation

Beange, Iona; McIntosh, Andrew; Kirkham, Elizabeth; Fletcher-Watson, Sue; Lawrie, Stephen; Batty, David; Boardman, James; Black, Corri; Porteous, David. (2019). A Celebration of Scottish Health Cohort Studies: Participants' attitudes towards data research, 2018 [dataset]. Division of Psychiatry. Centre for Clinical Brain Sciences. University of Edinburgh. https://doi.org/10.7488/ds/2728.
Date made available16 Dec 2019
PublisherEdinburgh DataShare
Temporal coverage10 Jun 2018 - 10 Jun 2018
Geographical coverageScotland,UK,UNITED KINGDOM

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