title: 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 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.
authors.affiliation: School of Social and Community Medicine, University of Bristol, Canynge Hall, Whatley Road, Bristol, BS8 2PS, UK. Suzanne.audrey@bristol.ac.uk.
authors.forename: Suzanne
authors.initials: S
authors.lastname: Audrey
authors.affiliation: ᅟ, ᅟ, Bristol, UK.
authors.forename: Lindsey
authors.initials: L
authors.lastname: Brown
authors.affiliation: School of Social and Community Medicine, University of Bristol, Canynge Hall, Whatley Road, Bristol, BS8 2PS, UK.
authors.forename: Rona
authors.initials: R
authors.lastname: Campbell
authors.affiliation: School of Social and Community Medicine, University of Bristol, Canynge Hall, Whatley Road, Bristol, BS8 2PS, UK.
authors.forename: Andy
authors.initials: A
authors.lastname: Boyd
authors.affiliation: School of Social and Community Medicine, University of Bristol, Canynge Hall, Whatley Road, Bristol, BS8 2PS, UK.
authors.forename: John
authors.initials: J
authors.lastname: Macleod
mesh_terms: D000293:Adolescent; D000367:Age Factors; D003219:Confidentiality; D057286:Electronic Health Records / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D033181:Information Dissemination; D016247:Information Storage and Retrieval / Q000379:methods*; D007258:Informed Consent / Q000523:psychology / Q000706:statistics & numerical data*; D007407:Interviews as Topic; D008137:Longitudinal Studies; D008297:Male; D011639:Public Opinion; D036301:Qualitative Research; D006113:United Kingdom; D055815:Young Adult
keywords: ALSPAC; Consent; Data linkage; Qualitative research; Young people