"A Question of Trust" and "a Leap of Faith"-Study Participants' Perspectives on Consent, Privacy, and Trust in Smart Home Research: Qualitative Study

被引:9
作者
Kennedy, Mari-Rose [1 ]
Huxtable, Richard [1 ]
Birchley, Giles [1 ]
Ives, Jonathan [1 ]
Craddock, Ian [2 ]
机构
[1] Univ Bristol, Ctr Eth Med, Bristol, Avon, England
[2] Univ Bristol, Dept Elect & Elect Engn, Bristol, Avon, England
来源
JMIR MHEALTH AND UHEALTH | 2021年 / 9卷 / 11期
基金
英国工程与自然科学研究理事会;
关键词
smart homes; assistive technology; research ethics; informed consent; privacy; anonymization; trust; CHALLENGES; ETHICS; HEALTH;
D O I
10.2196/25227
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Background: Ubiquitous, smart technology has the potential to assist humans in numerous ways, including with health and social care. COVID-19 has notably hastened the move to remotely delivering many health services. A variety of stakeholders are involved in the process of developing technology. Where stakeholders are research participants, this poses practical and ethical challenges, particularly if the research is conducted in people's homes. Researchers must observe prima facie ethical obligations linked to participants' interests in having their autonomy and privacy respected. Objective: This study aims to explore the ethical considerations around consent, privacy, anonymization, and data sharing with participants involved in SPHERE (Sensor Platform for Healthcare in a Residential Environment), a project for developing smart technology for monitoring health behaviors at home. Participants' unique insights from being part of this unusual experiment offer valuable perspectives on how to properly approach informed consent for similar smart home research in the future. Methods: Semistructured qualitative interviews were conducted with 7 households (16 individual participants) recruited from SPHERE. Purposive sampling was used to invite participants from a range of household types and ages. Interviews were conducted in participants' homes or on-site at the University of Bristol. Interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive thematic approach. Results: Four themes were identified-motivation for participating; transparency, understanding, and consent; privacy, anonymity, and data use; and trust in research. Motivations to participate in SPHERE stemmed from an altruistic desire to support research directed toward the public good. Participants were satisfied with the consent process despite reporting some difficulties-recalling and understanding the information received, the timing and amount of information provision, and sometimes finding the information to be abstract. Participants were satisfied that privacy was assured and judged that the goals of the research compensated for threats to privacy. Participants trusted SPHERE. The factors that were relevant to developing and maintaining this trust were the trustworthiness of the research team, the provision of necessary information, participants' control over their participation, and positive prior experiences of research involvement. Conclusions: This study offers valuable insights into the perspectives of participants in smart home research on important ethical considerations around consent and privacy. The findings may have practical implications for future research regarding the types of information researchers should convey, the extent to which anonymity can be assured, and the long-term duty of care owed to the participants who place trust in researchers not only on the basis of this information but also because of their institutional affiliation. This study highlights important ethical implications. Although autonomy matters, trust appears to matter the most. JMIR AND UHEALTH Kennedy et al Therefore, researchers should be alert to the need to foster and maintain trust, particularly as failing to do so might have deleterious effects on future research. (JMIRMhealth Uhealth 2021;9(11):e25227) doi: 10.2196/25227
引用
收藏
页数:16
相关论文
共 41 条
  • [1] Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme
    Aitken, Mhairi
    Cunningham-Burley, Sarah
    Pagliari, Claudia
    [J]. SCIENCE AND PUBLIC POLICY, 2016, 43 (05) : 713 - 723
  • [2] A review of smart homes in healthcare
    Amiribesheli, Mohsen
    Benmansour, Asma
    Bouchachia, Abdelhamid
    [J]. JOURNAL OF AMBIENT INTELLIGENCE AND HUMANIZED COMPUTING, 2015, 6 (04) : 495 - 517
  • [3] [Anonymous], 2019, UK STAND PUBL INV RE
  • [4] [Anonymous], 2018, SPHERE A SENS PLATF
  • [5] TRUST AND ANTITRUST
    BAIER, A
    [J]. ETHICS, 1986, 96 (02) : 231 - 260
  • [6] Smart homes, private homes? An empirical study of technology researchers' perceptions of ethical issues in developing smart-home health technologies
    Birchley, Giles
    Huxtable, Richard
    Murtagh, Madeleine
    ter Meulen, Ruud
    Flach, Peter
    Gooberman-Hill, Rachael
    [J]. BMC MEDICAL ETHICS, 2017, 18
  • [7] To stop or not to stop: dissent and undue burden as reasons to stop participation in paediatric research
    Bos, Wendy
    Westra, Anna
    de Beaufort, Inez
    van de Vathorst, Suzanne
    [J]. JOURNAL OF MEDICAL ETHICS, 2017, 43 (08) : 519 - 523
  • [8] Braun V., 2006, QUAL RES PSYCHOL, V3, P77, DOI DOI 10.1191/1478088706QP063OA
  • [9] Freedom and privacy in ambient intelligence
    Brey P.
    [J]. Brey, P. (p.a.e.brey@utwente.nl), 2005, Kluwer Academic Publishers (07) : 157 - 166
  • [10] Privacy, boundaries and smart homes for health: An ethnographic study
    Burrows, Alison
    Coyle, David
    Gooberman-Hill, Rachael
    [J]. HEALTH & PLACE, 2018, 50 : 112 - 118