Young people’s views about consenting to data linkage: findings from the PEARL qualitative study

Abstract Background Electronic administrative data exist in several domains which, if linked, are potentially useful for research. However, benefits from data linkage should be considered alongside risks such as the threat to privacy. Avon Longitudinal Study of Parents and Children (ALSPAC) is a bir...

Full description

Bibliographic Details
Main Authors: Suzanne Audrey, Lindsey Brown, Rona Campbell, Andy Boyd, John Macleod
Format: Article
Language:English
Published: BMC 2016-03-01
Series:BMC Medical Research Methodology
Subjects:
Online Access:http://link.springer.com/article/10.1186/s12874-016-0132-4
_version_ 1818612497517641728
author Suzanne Audrey
Lindsey Brown
Rona Campbell
Andy Boyd
John Macleod
author_facet Suzanne Audrey
Lindsey Brown
Rona Campbell
Andy Boyd
John Macleod
author_sort Suzanne Audrey
collection DOAJ
description Abstract Background Electronic administrative data exist in several domains which, if linked, are potentially useful for research. However, benefits from data linkage should be considered alongside risks such as the threat to privacy. Avon Longitudinal Study of Parents and Children (ALSPAC) is a birth cohort study. The Project to Enhance ALSPAC through Record Linkage (PEARL) was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. Qualitative research was incorporated in the PEARL study to examine participants’ views about data linkage and inform approaches to information sharing. This paper focusses on issues of consent. Methods Digitally recorded interviews were conducted with 55 participants aged 17–19 years. Terms and processes relating to consent, anonymization and data linkage were explained to interviewees. Scenarios were used to prompt consideration of linking different sources of data, and whether consent should be requested. Interview recordings were fully transcribed. Thematic analysis was undertaken using the Framework approach. Results Participant views on data linkage appeared to be most influenced by: considerations around the social sensitivity of the research question, and; the possibility of tangible health benefits in the public interest. Some participants appeared unsure about the effectiveness of anonymization, or did not always view effective anonymization as making consent unnecessary. This was related to notions of ownership of personal information and etiquette around asking permission for secondary use. Despite different consent procedures being explained, participants tended to equate consent with ‘opt-in’ consent through which participants are ‘asked’ if their data can be used for a specific study. Participants raising similar concerns came to differing conclusions about whether consent was needed. Views changed when presented with different scenarios, and were sometimes inconsistent. Conclusions Findings from this study question the validity of ‘informed consent’ as a cornerstone of good governance, and the extent to which potential research participants understand different types of consent and what they are consenting, or not consenting, to. Pragmatic, imaginative and flexible approaches are needed if research using data linkage is to successfully realise its potential for public good without undermining public trust in the research process.
first_indexed 2024-12-16T15:47:10Z
format Article
id doaj.art-df534fc6a8c7481aa4d779ff6a02016f
institution Directory Open Access Journal
issn 1471-2288
language English
last_indexed 2024-12-16T15:47:10Z
publishDate 2016-03-01
publisher BMC
record_format Article
series BMC Medical Research Methodology
spelling doaj.art-df534fc6a8c7481aa4d779ff6a02016f2022-12-21T22:25:46ZengBMCBMC Medical Research Methodology1471-22882016-03-0116111310.1186/s12874-016-0132-4Young people’s views about consenting to data linkage: findings from the PEARL qualitative studySuzanne Audrey0Lindsey Brown1Rona Campbell2Andy Boyd3John Macleod4School of Social and Community Medicine, University of Bristolᅟ, ᅟSchool of Social and Community Medicine, University of BristolSchool of Social and Community Medicine, University of BristolSchool of Social and Community Medicine, University of BristolAbstract Background Electronic administrative data exist in several domains which, if linked, are potentially useful for research. However, benefits from data linkage should be considered alongside risks such as the threat to privacy. Avon Longitudinal Study of Parents and Children (ALSPAC) is a birth cohort study. The Project to Enhance ALSPAC through Record Linkage (PEARL) was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. Qualitative research was incorporated in the PEARL study to examine participants’ views about data linkage and inform approaches to information sharing. This paper focusses on issues of consent. Methods Digitally recorded interviews were conducted with 55 participants aged 17–19 years. Terms and processes relating to consent, anonymization and data linkage were explained to interviewees. Scenarios were used to prompt consideration of linking different sources of data, and whether consent should be requested. Interview recordings were fully transcribed. Thematic analysis was undertaken using the Framework approach. Results Participant views on data linkage appeared to be most influenced by: considerations around the social sensitivity of the research question, and; the possibility of tangible health benefits in the public interest. Some participants appeared unsure about the effectiveness of anonymization, or did not always view effective anonymization as making consent unnecessary. This was related to notions of ownership of personal information and etiquette around asking permission for secondary use. Despite different consent procedures being explained, participants tended to equate consent with ‘opt-in’ consent through which participants are ‘asked’ if their data can be used for a specific study. Participants raising similar concerns came to differing conclusions about whether consent was needed. Views changed when presented with different scenarios, and were sometimes inconsistent. Conclusions Findings from this study question the validity of ‘informed consent’ as a cornerstone of good governance, and the extent to which potential research participants understand different types of consent and what they are consenting, or not consenting, to. Pragmatic, imaginative and flexible approaches are needed if research using data linkage is to successfully realise its potential for public good without undermining public trust in the research process.http://link.springer.com/article/10.1186/s12874-016-0132-4Data linkageConsentYoung peopleQualitative researchALSPAC
spellingShingle Suzanne Audrey
Lindsey Brown
Rona Campbell
Andy Boyd
John Macleod
Young people’s views about consenting to data linkage: findings from the PEARL qualitative study
BMC Medical Research Methodology
Data linkage
Consent
Young people
Qualitative research
ALSPAC
title Young people’s views about consenting to data linkage: findings from the PEARL qualitative study
title_full Young people’s views about consenting to data linkage: findings from the PEARL qualitative study
title_fullStr Young people’s views about consenting to data linkage: findings from the PEARL qualitative study
title_full_unstemmed Young people’s views about consenting to data linkage: findings from the PEARL qualitative study
title_short Young people’s views about consenting to data linkage: findings from the PEARL qualitative study
title_sort young people s views about consenting to data linkage findings from the pearl qualitative study
topic Data linkage
Consent
Young people
Qualitative research
ALSPAC
url http://link.springer.com/article/10.1186/s12874-016-0132-4
work_keys_str_mv AT suzanneaudrey youngpeoplesviewsaboutconsentingtodatalinkagefindingsfromthepearlqualitativestudy
AT lindseybrown youngpeoplesviewsaboutconsentingtodatalinkagefindingsfromthepearlqualitativestudy
AT ronacampbell youngpeoplesviewsaboutconsentingtodatalinkagefindingsfromthepearlqualitativestudy
AT andyboyd youngpeoplesviewsaboutconsentingtodatalinkagefindingsfromthepearlqualitativestudy
AT johnmacleod youngpeoplesviewsaboutconsentingtodatalinkagefindingsfromthepearlqualitativestudy