Information for study participants

Privacy notice

The Glasgow Students Study is controlled by the MRC Integrative Epidemiology Unit at the University of Bristol. We hold data collected at clinics of the Glasgow University Student Health Service between 1948 and 1972. This includes the names and addresses of students, their medical histories and family backgrounds, a doctor’s assessment of their current health, and details of their lifestyles at the time. These have been linked to national records of death, cancer diagnosis and migration. We also hold similar data from the Glasgow Alumni Health and Lifestyle Study which was collected from the former students by questionnaires posted to them in 2000-2003.

We will use the data only for non-commercial research purposes. Published outcomes will contain no individual-level data but will contribute to knowledge of the factors causing health and disease in populations. No decisions regarding the individual treatment of participants will be affected by the data we hold about them.

Retrospective approval to use the Glasgow Students Dataset for research purposes was granted by MREC Scotland and our legal basis for processing the data is that “processing is necessary for the performance of a task carried out in the public interest” [GDPR Article 6(1)(e)]. The data we hold and process include “Special Category Data” including data on people’s health and racial identity. This requires additional justification. In our case, the justification is that “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject” [GDPR Article 9(2)(j)].

The Glasgow Students Study and our linkage to NHS health data are subject to approval by an NHS Research Ethics Committee, by the Public Benefit and Privacy Panel in Scotland and by the Confidentiality Advisory Group in England and Wales. The study’s management is guided by the Legacy Cohorts Steering Committee, informed by the Public Advisory Group, within the Integrative Epidemiology Unit at the University of Bristol.

The original data in the Glasgow Students Study are stored in a digital “Safehaven” with limited access to ensure their accuracy and security. Specific research analyses will be carried out on subsets of the data containing only the variables and records necessary for that analysis. Participants’ names in these data subsets will be replaced by randomised ID numbers to prevent their identification.

We may share data with other researchers within the University of Bristol or at other institutions but variables which identify individuals will not be shared; researchers will be provided with restricted subsets of the data as described above. All researchers and IT staff within the University of Bristol will be subject to the University’s information security policy and collaborators in outside institutions will sign a data transfer agreement restricting their use and retention of the data.

We contacted all traceable participants in the 2000-2003 follow-up exercise but were not able to contact all of the original students and have no plans to contact participants in future. We plan to retain the data indefinitely but if you were registered with the University of Glasgow’s Student Health Service between 1948 and 1972 you have a right to ensure that the data we hold about you are correct and to withdraw from the study if you wish to. Please contact the study managers David Carslake or George Davey Smith if you have questions or concerns about the study.