"A Question of Trust" and "a Leap of Faith"-Study Participants' Perspectives on Consent, Privacy, and Trust in Smart Home Research: Qualitative Study.
"A Question of Trust" and "a Leap of Faith"-Study Participants' Perspectives on Consent, Privacy, and Trust in Smart Home Research: Qualitative Study.
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DOI：
10.2196/25227
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发表时间：
2021-11-26
影响因子：
5
通讯作者：
Craddock I
中科院分区：
文献类型：
--
作者：
Kennedy MR;Huxtable R;Birchley G;Ives J;Craddock I
无处不在的智能技术有可能以多种方式帮助人类，包括健康和社会护理。COVID-19明显加快了远程提供许多医疗服务的步伐。各种各样的利益相关者都参与了技术开发过程。如果利益攸关方是研究的参与者，这就提出了实际和道德上的挑战，特别是如果研究是在人们的家中进行的。研究人员必须遵守与参与者的利益相关的初步道德义务，尊重他们的自主权和隐私。本研究旨在探讨参与SPHERE（住宅环境中医疗保健传感器平台）的参与者的同意，隐私，匿名和数据共享的伦理考虑，SPHERE是一个开发智能技术以监测家庭健康行为的项目。参与者通过参与这项不同寻常的实验获得的独特见解，为未来如何正确处理类似智能家居研究的知情同意提供了宝贵的视角。半结构化定性访谈进行了7个家庭（16个个人参与者）从SPHERE招募。有目的的抽样被用来邀请来自不同家庭类型和年龄的参与者。访谈是在参与者的家中或现场在布里斯托大学进行的。访谈进行了数字记录，逐字转录，并使用归纳主题的方法进行分析。四个主题被确定参与动机;透明度，理解和同意;隐私，匿名和数据使用;和信任的研究。参与SPHERE的动机源于支持面向公共利益的研究的利他主义愿望。参与者对同意过程感到满意，尽管报告了一些困难-回忆和理解收到的信息，提供信息的时间和数量，有时发现信息是抽象的。参与者对隐私得到保证感到满意，并认为研究的目标弥补了对隐私的威胁。参与者信任SPHERE。与发展和保持这种信任相关的因素是研究团队的可信度，提供必要的信息，参与者对参与的控制，以及参与研究的积极经验。这项研究为智能家居研究参与者关于同意和隐私的重要伦理考虑的观点提供了有价值的见解。研究结果可能有实际意义的研究人员应传达的信息类型，在何种程度上可以保证匿名性，以及长期的照顾责任欠的参与者谁把信任的研究人员不仅在此信息的基础上，但也因为他们的机构隶属关系的未来研究。这项研究强调了重要的伦理意义。虽然自治很重要，但信任似乎最重要。因此，研究人员应该警惕培养和保持信任的必要性，特别是如果不这样做，可能会对未来的研究产生有害影响。
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. 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. 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. 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. 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. 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.
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