Research ethics for mobile sensing device use by vulnerable populations.


Journal

Social science & medicine (1982)
ISSN: 1873-5347
Titre abrégé: Soc Sci Med
Pays: England
ID NLM: 8303205

Informations de publication

Date de publication:
07 2019
Historique:
received: 16 01 2019
revised: 09 04 2019
accepted: 24 04 2019
pubmed: 7 5 2019
medline: 4 8 2020
entrez: 7 5 2019
Statut: ppublish

Résumé

Devices equipped with sensors to track mobility, such as through Global Position Systems (GPS) and accelerometery, are increasingly being used for research. Following Canadian, US, and International guidelines there is a need to give special consideration when conducting research with vulnerable populations. This paper examines specific ethical concerns for conducting research with mobile sensing devices for use by vulnerable populations, considering aspects of both research design and research process. Drawing on insights from feminist design and aligned fields, such as participatory design and action research, we contend that any research design and process for working with vulnerable populations must be developed in collaboration with the particular groups and communities who are part of the research. As part of this process of collaborative research, we discuss risks in terms of the lack of control over data associated with choosing commercial devices, as well as practicality and obtrusiveness of devices for the wearer. We also discuss the significance of informed consent and refusal and issues relating to security and safety during research. As part of the collaborative research design and process, we argue that participants should be given as much control over their data as possible. Based on this discussion, we provide recommendations for researchers to consider, which are broadly relevant for research using mobile sensing devices but particularly significant in relation to vulnerable populations.

Identifiants

pubmed: 31059869
pii: S0277-9536(19)30235-7
doi: 10.1016/j.socscimed.2019.04.035
pii:
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

50-57

Informations de copyright

Copyright © 2019 Elsevier Ltd. All rights reserved.

Auteurs

Samantha Breslin (S)

Department of Anthropology, University of Copenhagen, Denmark.

Martine Shareck (M)

Dalla Lana School of Public Health, University of Toronto, Ontario, Canada.

Daniel Fuller (D)

Canada Research Chair in Population Physical Activity, School of Human Kinetics and Recreation, Memorial University of Newfoundland, St. John's, NL, A1C 5S7, Canada. Electronic address: dfuller@mun.ca.

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