Ethical implications of location and accelerometer measurement in health research studies with mobile sensing devices

Quantification of individual behaviours using mobile sensing devices, including physical activity and spatial location, is a rapidly growing field in both academic research and the corporate world. In this case study, we summarize the literature examining the ethical aspects of mobile sensing and ar...

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Published inSocial science & medicine (1982) Vol. 191; pp. 84 - 88
Main Authors Fuller, Daniel, Shareck, Martine, Stanley, Kevin
Format Journal Article
LanguageEnglish
Published England Elsevier Ltd 01.10.2017
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Abstract Quantification of individual behaviours using mobile sensing devices, including physical activity and spatial location, is a rapidly growing field in both academic research and the corporate world. In this case study, we summarize the literature examining the ethical aspects of mobile sensing and argue that a robust discussion about the ethical implications of mobile sensing for research purposes has not occurred sufficiently in the literature. Based on our literature summary and guided by basic ethical principles set out in Canadian, US, and International Ethics documents we propose four areas where further discussion should occur: consent, privacy and confidentiality, mitigating risk, and consideration of vulnerable populations. We argue that ongoing consent is crucial for participants to be aware of the precision and volume of data that is collected with mobile sensing devices. Related to privacy we discuss that participants may not agree that anonymized data is sufficient for privacy and confidentiality when mobile sensing data are collected. There has been some discussion about mitigating risk in the literature. We highlight that the researchers’ obligations toward mitigating risks that are not directly related to the study purpose are unclear and require considerable discussion. Finally, using mobile sensing devices to study vulnerable populations requires careful consideration, particularly with respect to balancing research needs with participant burden. Based on our discussion, we identify a broad set of unanswered questions about the ethics of mobile sensing that should be addressed by the research community. •Mobile sensing devices are increasingly common for participant measurement.•Minimal discussion of the research ethics of mobile sensing has occurred.•Mobile sensing includes distinct ethical concerns for researchers and participants.
AbstractList Quantification of individual behaviours using mobile sensing devices, including physical activity and spatial location, is a rapidly growing field in both academic research and the corporate world. In this case study, we summarize the literature examining the ethical aspects of mobile sensing and argue that a robust discussion about the ethical implications of mobile sensing for research purposes has not occurred sufficiently in the literature. Based on our literature summary and guided by basic ethical principles set out in Canadian, US, and International Ethics documents we propose four areas where further discussion should occur: consent, privacy and confidentiality, mitigating risk, and consideration of vulnerable populations. We argue that ongoing consent is crucial for participants to be aware of the precision and volume of data that is collected with mobile sensing devices. Related to privacy we discuss that participants may not agree that anonymized data is sufficient for privacy and confidentiality when mobile sensing data are collected. There has been some discussion about mitigating risk in the literature. We highlight that the researchers' obligations toward mitigating risks that are not directly related to the study purpose are unclear and require considerable discussion. Finally, using mobile sensing devices to study vulnerable populations requires careful consideration, particularly with respect to balancing research needs with participant burden. Based on our discussion, we identify a broad set of unanswered questions about the ethics of mobile sensing that should be addressed by the research community.Quantification of individual behaviours using mobile sensing devices, including physical activity and spatial location, is a rapidly growing field in both academic research and the corporate world. In this case study, we summarize the literature examining the ethical aspects of mobile sensing and argue that a robust discussion about the ethical implications of mobile sensing for research purposes has not occurred sufficiently in the literature. Based on our literature summary and guided by basic ethical principles set out in Canadian, US, and International Ethics documents we propose four areas where further discussion should occur: consent, privacy and confidentiality, mitigating risk, and consideration of vulnerable populations. We argue that ongoing consent is crucial for participants to be aware of the precision and volume of data that is collected with mobile sensing devices. Related to privacy we discuss that participants may not agree that anonymized data is sufficient for privacy and confidentiality when mobile sensing data are collected. There has been some discussion about mitigating risk in the literature. We highlight that the researchers' obligations toward mitigating risks that are not directly related to the study purpose are unclear and require considerable discussion. Finally, using mobile sensing devices to study vulnerable populations requires careful consideration, particularly with respect to balancing research needs with participant burden. Based on our discussion, we identify a broad set of unanswered questions about the ethics of mobile sensing that should be addressed by the research community.
Quantification of individual behaviours using mobile sensing devices, including physical activity and spatial location, is a rapidly growing field in both academic research and the corporate world. In this case study, we summarize the literature examining the ethical aspects of mobile sensing and argue that a robust discussion about the ethical implications of mobile sensing for research purposes has not occurred sufficiently in the literature. Based on our literature summary and guided by basic ethical principles set out in Canadian, US, and International Ethics documents we propose four areas where further discussion should occur: consent, privacy and confidentiality, mitigating risk, and consideration of vulnerable populations. We argue that ongoing consent is crucial for participants to be aware of the precision and volume of data that is collected with mobile sensing devices. Related to privacy we discuss that participants may not agree that anonymized data is sufficient for privacy and confidentiality when mobile sensing data are collected. There has been some discussion about mitigating risk in the literature. We highlight that the researchers’ obligations toward mitigating risks that are not directly related to the study purpose are unclear and require considerable discussion. Finally, using mobile sensing devices to study vulnerable populations requires careful consideration, particularly with respect to balancing research needs with participant burden. Based on our discussion, we identify a broad set of unanswered questions about the ethics of mobile sensing that should be addressed by the research community. •Mobile sensing devices are increasingly common for participant measurement.•Minimal discussion of the research ethics of mobile sensing has occurred.•Mobile sensing includes distinct ethical concerns for researchers and participants.
Quantification of individual behaviours using mobile sensing devices, including physical activity and spatial location, is a rapidly growing field in both academic research and the corporate world. In this case study, we summarize the literature examining the ethical aspects of mobile sensing and argue that a robust discussion about the ethical implications of mobile sensing for research purposes has not occurred sufficiently in the literature. Based on our literature summary and guided by basic ethical principles set out in Canadian, US, and International Ethics documents we propose four areas where further discussion should occur: consent, privacy and confidentiality, mitigating risk, and consideration of vulnerable populations. We argue that ongoing consent is crucial for participants to be aware of the precision and volume of data that is collected with mobile sensing devices. Related to privacy we discuss that participants may not agree that anonymized data is sufficient for privacy and confidentiality when mobile sensing data are collected. There has been some discussion about mitigating risk in the literature. We highlight that the researchers' obligations toward mitigating risks that are not directly related to the study purpose are unclear and require considerable discussion. Finally, using mobile sensing devices to study vulnerable populations requires careful consideration, particularly with respect to balancing research needs with participant burden. Based on our discussion, we identify a broad set of unanswered questions about the ethics of mobile sensing that should be addressed by the research community.
Author Stanley, Kevin
Fuller, Daniel
Shareck, Martine
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Keywords Ethics
Privacy
Informed consent
Location tracking
Accelerometery
Global positioning system
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Snippet Quantification of individual behaviours using mobile sensing devices, including physical activity and spatial location, is a rapidly growing field in both...
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SubjectTerms Accelerometery
Accelerometry - ethics
Canada
Confidentiality - ethics
Ethics
Exercise
Geographic Mapping
Global positioning system
Humans
Informed consent
Informed Consent - ethics
Location tracking
Privacy
Research - instrumentation
Research Subjects
Vulnerable Populations
Title Ethical implications of location and accelerometer measurement in health research studies with mobile sensing devices
URI https://dx.doi.org/10.1016/j.socscimed.2017.08.043
https://www.ncbi.nlm.nih.gov/pubmed/28915431
https://www.proquest.com/docview/1940059857
Volume 191
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