eprintid: 1559780
rev_number: 17
eprint_status: archive
userid: 608
dir: disk0/01/55/97/80
datestamp: 2017-10-06 11:29:26
lastmod: 2019-10-17 07:22:29
status_changed: 2017-10-06 11:29:26
type: thesis
metadata_visibility: show
creators_name: Kempe, JLC
title: Online research involving young people with cancer: an exploration of guidance, policies and regulations governing internet-mediated research
ispublished: unpub
divisions: A01
divisions: B02
divisions: D13
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.
date: 2017-06-28
date_type: submitted
oa_status: green
full_text_type: other
thesis_class: res_masters_open
language: eng
primo: open
primo_central: open_green
verified: verified_manual
elements_id: 1298988
lyricists_name: Kempe, Johanna
lyricists_id: JKEMP57
actors_name: Kempe, Johanna
actors_name: Allington-Smith, Dominic
actors_id: JKEMP57
actors_id: DAALL44
actors_role: owner
actors_role: impersonator
full_text_status: public
pages: 140
event_title: UCL (University College London)
institution: UCL (University College London)
department: Population Policy and Practice
thesis_type: Masters
citation:        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).     Green open access   
 
document_url: https://discovery.ucl.ac.uk/id/eprint/1559780/1/Kempe_14106908-mphil%20thesis-JK.pdf