Use this URL to cite or link to this record in EThOS:
Title: Ethical aspects of linkage to routine individual data in epidemiological research involving young people
Author: Kennedy, Mari-Rose
ISNI:       0000 0004 5923 1161
Awarding Body: University of Bristol
Current Institution: University of Bristol
Date of Award: 2014
Availability of Full Text:
Access from EThOS:
This thesis explores the ethical issues raised by linkage to routine administrative data specifically in relation to longitudinal birth-cohort studies. An established birth-cohort based at the University of Bristol, the Avon Longitudinal Study of Parents And Children (ALSPAC) forms the case study for this investigation. In undertaking this research I used an integrated empirical ethics approach, conducting a qualitative investigation of stakeholder perspectives in the Project to Enhance ALSPAC through Record Linkage (PEARL), and utilising the data generated to reflect upon relevant issues raised in the research ethics literature. Semi-structured interviews were conducted with key stakeholders in PEARL: researchers (n=6), individuals involved in the ALSPAC Ethics and Law Committee (n=6), and young people who are members of the cohort (n=24). The aims were to explore the experiences and perspectives of these participants to gain a contextualised and nuanced understanding of the ethical issues raised by the use of administrative data in longitudinal birth-cohort research. The data were thematically analysed and core themes of understanding, special trusting relationships and intimacy were identified that explained the ALSPAC research environment. The significant ethical issues pertaining to data linkage were identified in the main themes of benefits, burdens and informed consent. It was found that the specific research environment of ALSPAC was important in shaping the nature of ethical issues in relation to data linkage, and influential in terms of how participants understood and acted in relation to these issues in practice. By reflecting on the findings of this study and the research ethics literature, recommendations are made for the practice of data linkage. This study adds both to empirical and ethical knowledge about the ethical issues raised by data linkage, by specifically examining it in relation to longitudinal birth-cohort studies and stakeholders; which are currently under-researched areas in this field.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available