Kempe, JLC;
(2017)
Online research involving young people with cancer: an exploration of guidance, policies and regulations governing internet-mediated research.
Masters thesis , UCL (University College London).
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Abstract
Background: Internet-mediated research methodologies are increasingly used to study young people with cancer at any stage during the illness trajectory. Researchers are increasingly debating the ethics of these methods. Despite this limited attention has been given to the actual ethical issues that arise during the study. Furthermore, few studies have explored the types of ethical conflicts that research ethics committees (RECs) identify in relation to this type of research. / Objective: The aim of the thesis is to explore ethical issues by 1) identifying the ethical conflicts researchers report in Internet-mediated research and 2) exploring the content of REC documentation and compare the ethical issues arising in Internet-mediated versus offline research. / Methods: Chapter 1: A review of the literature outlining the development of ethical guidelines and critiques of the current system. Additionally, the chapter outlines the debate on ethical issues in Internet-mediated research involving young people with lifelimiting or life-threatening conditions. Chapter 2: A systematic review of original English language research describing Internetmediated research involving young people with cancer and young cancer survivors (aged 13-25) to explore the methods employed and what ethical issues arose during the study. Chapter 3: A document analysis of REC documentation associated with applications for Internet-mediated research and offline research with young people with malignant or nonmalignant conditions to explore what impact if any Internet-mediated methodology has on REC appraisal and practice. Chapter 4: A discussion of the findings of the thesis, the implications for research and an exploration of directions for future research. / Results: While few studies reported on ethical issues arising over the course of the study researchers tended to highlight privacy and prevention of harm. This was replicated in the chapter 3 whereby we identified few ethical issues unique to Internet-mediated research. This contrasts with the extensive literature on these methodologies indicating unique ethical considerations. / Implications: There is misplaced emphasis in the literature on the need for additional ethical guidelines specifically developed for Internet-mediated research. The novel findings of this study contribute to the discussion over the ethics of Internet-mediated research with young people with life-limited and life-threatening conditions and how RECs are practically applying guidelines.
| Type: | Thesis (Masters) |
|---|---|
| Title: | Online research involving young people with cancer: an exploration of guidance, policies and regulations governing internet-mediated research |
| Event: | UCL (University College London) |
| Open access status: | An open access version is available from UCL Discovery |
| Language: | English |
| UCL classification: | UCL > Provost and Vice Provost Offices UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health |
| URI: | https://discovery.ucl.ac.uk/id/eprint/1559780 |
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