Mari-Rose Kennedy

Advances in soft and wearable robotics, surgery, biomaterials and biomimetics suggest that implantable artificial muscles are becoming a reality. If successful, these implants promise to help alleviate muscular conditions, like sarcopenia, by complementing natural muscles. Artificial muscles therefore promise to empower and benefit their recipients—but they also risk them (and others) being disempowered or otherwise harmed. We adopted a future-focused, anticipatory ethics approach to explore the ethical dimensions of the design, development and deployment of artificial muscles. A narrative review of pertinent literature was conducted to explore ethical questions associated with the overarching obligations to respect autonomy, balance benefits and burdens, and serve the public interest. Our analysis suggests that careful consideration should be given to: the selection of materials and methods; participants and patients; ensuring that recipients provide voluntary and informed consent; mechanisms of review and redress; arrangements for sharing and protecting data; managing access and distribution; and ensuring the inclusion of, and engagement with, diverse stakeholders. We conclude that further such engagement is now needed, including in the co-production of standards—such as an ethical framework—to guide developments going forward.

Background: Immersive virtual reality (VR) interventions are being developed and trialed for use in the treatment of eating disorders. However, little work has explored the opinions of people with eating disorders, or the clinicians who treat them, on the possible use of VR in this context. Objective: This study aims to use qualitative methodology to explore the views of people with eating disorders, and clinicians who treat them, on the possible use of VR in the treatment of eating disorders. Methods: We conducted a series of focus groups and interviews with people with lived experience of eating disorders and clinicians on their views about VR and how it could potentially be used in the treatment of eating disorders. People with lived experience of eating disorders were recruited between October and December 2020, with focus groups held online between November 2020 and February 2021; clinicians were recruited in September 2021 and interviewed between September and October 2021. We took a thematic approach to analyzing the resulting qualitative data. Results: We conducted 3 focus groups with 10 individuals with a current or previous eating disorder, 2 focus groups with 4 participants, and 1 with 2 participants. We held individual interviews with 4 clinicians experienced in treating people with eating disorders. Clinicians were all interviewed one-to-one because of difficulties in scheduling mutually convenient groups. We describe themes around representing the body in VR, potential therapeutic uses for VR, the strengths and limitations of VR in this context, and the practicalities of delivering VR therapy. Suggested therapeutic uses were to practice challenging situations around food-related and weight/appearance-related scenarios and interactions, to retrain attention, the representation of the body, to represent the eating disorder, for psychoeducation, and to enable therapeutic conversations with oneself. There was a substantial agreement between the groups on these themes. Conclusions: People with lived experience of eating disorders and clinicians with experience in treating eating disorders generated many ideas as to how VR could be used as a part of eating disorders treatment. They were also aware of potential limitations and expressed the need for caution around how bodies are represented in a VR setting.

BACKGROUND Immersive virtual reality (VR) interventions are being developed and trialed for use in the treatment of eating disorders. However, little work has explored the opinions of people with eating disorders, or the clinicians who treat them, on the possible use of VR in this context. OBJECTIVE This study aims to use qualitative methodology to explore the views of people with eating disorders, and clinicians who treat them, on the possible use of VR in the treatment of eating disorders. METHODS We conducted a series of focus groups and interviews with people with lived experience of eating disorders and clinicians on their views about VR and how it could potentially be used in the treatment of eating disorders. People with lived experience of eating disorders were recruited between October and December 2020, with focus groups held online between November 2020 and February 2021; clinicians were recruited in September 2021 and interviewed between September and October 2021. We took a thematic approach to analyzing the resulting qualitative data. RESULTS We conducted 3 focus groups with 10 individuals with a current or previous eating disorder, 2 focus groups with 4 participants, and 1 with 2 participants. We held individual interviews with 4 clinicians experienced in treating people with eating disorders. Clinicians were all interviewed one-to-one because of difficulties in scheduling mutually convenient groups. We describe themes around representing the body in VR, potential therapeutic uses for VR, the strengths and limitations of VR in this context, and the practicalities of delivering VR therapy. Suggested therapeutic uses were to practice challenging situations around food-related and weight/appearance-related scenarios and interactions, to retrain attention, the representation of the body, to represent the eating disorder, for psychoeducation, and to enable therapeutic conversations with oneself. There was a substantial agreement between the groups on these themes. CONCLUSIONS People with lived experience of eating disorders and clinicians with experience in treating eating disorders generated many ideas as to how VR could be used as a part of eating disorders treatment. They were also aware of potential limitations and expressed the need for caution around how bodies are represented in a VR setting.

Research integrity is fundamental to the validity and reliability of scientific findings, and for ethical conduct of research. As part of PRINTEGER (Promoting Integrity as an Integral Dimension of Excellence in Research), this study explores the views of researchers, research managers, administrators, and governance advisors in Estonia, Italy, Norway and UK, focusing specifically on their understanding of institutional and organisational influences on research integrity.A total of 16 focus groups were conducted. Thematic analysis of the data revealed that competition is pervasive and appeared in most themes relating to integrity. The structural frameworks for research such as funding, evaluation and publication were thought to both protect and, more commonly, undermine integrity. In addition, institutional systems, including workload and research governance, shaped participants’ day-to-day work environment, also affecting research integrity. Participants also provided ideas for promoting research integrity, including training, and creating conditions that would be supportive of research integrity.These findings support a shift away from individual blame and towards the need for structural and institutional changes, including organisations in the wider research environment, for example funding bodies and publishing companies.

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 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. 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.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). 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 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. 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.