AJOB Empirical Bioethics

States and families are facing growing challenges provide adequate care for older persons. Smart home health technologies (SHHTs) in the forms of sensor or robotic devices have been discussed as technical solutions for caregiving. Ethical and social concerns are raised with the use of such technologies for caregiving purposes, a particularly prominent one being privacy. This paper contributes to the literature by distinguishing privacy concerns into both the type of technologies and conceptual dimensions.

Yi Jiao (Angelina) Tian

Vanessa Duong

Eike Buhr

Nadine Andrea Felber

Delphine Roulet Schwab

Tenzin Wangmo

Monitored and Cared for at Home? Privacy Concerns When Using Smart Home Health Technologies to Care for Older Persons

在家监控与照顾？使用智能家居健康技术照顾老年人时的隐私担忧

In current Western medical ethics, patient-centered medicine is considered the norm. However, the cultural background of collectivism in East Asia often leads to family-centered decision-making. In Japan, prior studies have reported that family-centered decision-making is more likely to be preferred in situations of disease notification and end-of-life decision-making. Nonetheless, there has been a recent shift from collectivism to individualism due to changes in the social structure. Various personal factors have also been reported to influence moral decision-making. Therefore, this study examined whether the current trend in attitudes of healthcare decision-making in Japan is family-centered or patient-centered among the general public and physicians. In addition, the personal factors that influence this tendency were examined.Three vignettes on disease notification and two vignettes on decision-making during end-of-life care were created, and 457 members of the public and 284 physicians were asked about their attitudes (behavioral intentions) regarding these vignettes.Approximately, 95% of physicians were patient-centered in explaining the patient's severe medical condition. However, approximately 80% of physicians emphasized the wishes of the family over patient wishes when making life-sustaining decisions. Nearly half the general public emphasized the patient's wishes in the explanation of a severe medical condition and in life-sustaining decisions. In both the public and physician groups, personal factors, particularly the presence or absence of a disease under treatment and prior caregiving experience, influenced ethical attitudes toward medical treatment decisions.In relatively low-conflict situations, such as the announcement of a patient's medical condition, physicians tended to be patient-centered, while they tended to be family-centered in situations of strong conflict in withholding life-sustaining treatment. The fact that personal factors influenced the family-centered response in situations of strong conflict highlights the importance of not only acquiring knowledge of medical ethics but also learning to fairly apply this knowledge in practice.

Yoshiyuki Takimoto

Tadanori Nabeshima

Ethical Healthcare Attitudes of Japanese Citizens and Physicians: Patient-Centered or Family-Centered?

日本公民与医生的医疗伦理态度：以患者为中心还是以家庭为中心？

Objective Analyze racial differences in comfort with medical research using an alternative to the traditional approach that treats white people as a raceless norm.Methods Quantitative analysis of survey responses (n = 1,570) from Black and white residents of the US to identify relationships between perceptions of research as a right or a risk, and comfort participating in medical research.Results A lower proportion of white respondents reported that medical experimentation occurred without patient consent (p < 0.001) and a higher proportion of white respondents reported that it should be their right to participate in medical research (p = 0.02). Belief in one's right to participate was significantly predictive of comfort (b = 0.37, p < 0.001). Belief in experimentation without consent was significantly predictive of comfort for white respondents but not for Black respondents in multivariable analysis.Conclusions A rights-based orientation and less concern about the risks of medical research among white respondents demonstrate comparative advantage. Efforts to diversify medical research may perpetuate structural racism if they do not (1) critically engage with whiteness and its role in comfort with participation, and (2) identify and respond specifically to the needs of Black patients.

Paige Nong

Melissa Creary

Jodyn Platt

Sharon Kardia

A Critical Analysis of White Racial Framing and Comfort with Medical Research

白人种族框架与医学研究舒适度的批判性分析

Background There is ongoing debate regarding whether and under which circumstances secondary findings (SF) should be offered in the pediatric context. Although studies have examined patient perspectives on receiving SF, little research has been conducted examining the experiences of clinicians offering SF to parents of newborns receiving genomic sequencing for a recently diagnosed medical condition.Methods To address this, we conducted qualitative interviews exploring the views and experiences of 12 clinicians who offered SF to parents of infants who had diagnostic exome sequencing (ES) to identify the cause of their hearing loss. Interviews explored clinicians’ accounts of parents’ choices and decision-making about receiving SF, their views on whether and when to offer SF, their experiences returning SF, and any ethical challenges they encountered. Interviews were audio-recorded, transcribed and analyzed using inductive content analysis.Results Clinicians reported parents who declined all SF often felt finding out about future conditions unrelated to their child’s hearing loss may be unhelpful, or even harmful, or were overwhelmed by their child’s diagnosis. Clinicians also reported that some parents chose SF because they felt obliged to, even if they did not want to receive them. They explained that while some parents experienced decision-making regarding SF as positive, for others, this process was challenging or distressing. While clinicians generally agreed SF should be offered, mainly to promote parental choice, most felt SF should be offered after disclosing diagnostic results, primarily to avoid overwhelming parents. Clinicians encountered several ethical challenges, including balancing parental autonomy with non-maleficence, wanting to report or not report certain SF, and questioning whether parents can make an autonomous choice regarding SF.Conclusions Our findings, which are novel as they relate to parents of young infants with a recent diagnosis of hearing loss, add new insights into clinicians’ and parents’ decision-making regarding SF in pediatrics.

Lauren Notini

Clara Gaff

Julian Savulescu

Danya F. Vears

Offering and Returning Secondary Findings in the Context of Exome Sequencing for Hearing Loss: Clinicians’ Views and Experiences

在耳聋全外显子组测序背景下提供和返回二次发现：临床医生的观点和经验

Background Ethical and scientific principles require that clinical trials address an important question and have the resources needed to complete the study. However, there are no clear standards for review that would ensure that these principles are upheld.Methods We conducted semi-structured interviews with a convenience sample of nineteen experts in clinical trial design, conduct, and/or oversight to elucidate current practice and identify areas of need with respect to ensuring the scientific value and feasibility of clinical trials prior to initiation and while ongoing. We used a priori and grounded theory to analyze the data and constant comparative method to induce higher order themes.Results Interviewees perceived determination of scientific value as the responsibility of the investigator and, secondarily, other parties who review or oversee research. Interviewees reported that ongoing trials are rarely reevaluated due to emerging evidence from external sources, evaluation is complex, and there would be value in the development of standards for monitoring and evaluating evidence systematically. Investigators, IRBs, and/or data monitoring committees (DMCs) could undertake these responsibilities. Feasibility assessments are performed but are typically inadequate; potential solutions are unclear.Conclusions There are three domains where current approaches are suboptimal and in which further guidance is needed. First, who has the responsibility for conducting scientific review, whether it be the investigator, IRB, and/or DMC is often unclear. Second, the standards for scientific review (e.g., appropriate search terms, data sources, and analytic plan) should be defined. Third, guidance is needed on the evaluation of ongoing studies in light of potentially new and evolving evidence, with particular reference to evidence from outside the trial itself.

Walker Morrell

Luke Gelinas

Deborah Zarin

Barbara E. Bierer

Ensuring the Scientific Value and Feasibility of Clinical Trials: A Qualitative Interview Study

确保临床试验的科学价值和可行性：一项定性访谈研究

Some have hypothesized that talk about suffering can be used by clinicians to motivate difficult decisions, especially to argue for reducing treatment at the end of life. We examined how talk about suffering is related to decision-making for critically ill patients, by evaluating transcripts of conversations between clinicians and patients' families.

Brent M. Kious

Judith B. Vick

Peter A. Ubel

Olivia Sutton

Jennifer Blumenthal-Barby

Christopher E. Cox

Deepshikha Ashana

Talking About Suffering in the Intensive Care Unit

重症监护病房中的苦难谈

Deep brain stimulation (DBS) is approved under a humanitarian device exemption to manage treatment-resistant obsessive-compulsive disorder (TR-OCD) in adults. It is possible that DBS may be trialed or used clinically off-label in children and adolescents with TR-OCD in the future. DBS is already used to manage treatment-resistant childhood dystonia. Evidence suggests it is a safe and effective intervention for certain types of dystonia. Important questions remain unanswered about the use of DBS in children and adolescents with TR-OCD, including whether mental health clinicians would refer pediatric patients for DBS, and who would be a good candidate for DBS.

Ilona Cenolli

Tiffany A. Campbell

Natalie Dorfman

Meghan Hurley

Jared N. Smith

Kristin Kostick-Quenet

Eric A. Storch

Gabriel Lázaro-Muñoz

Deep Brain Stimulation for Childhood Treatment-Resistant Obsessive-Compulsive Disorder: Mental Health Clinician Views on Candidacy Factors

儿童难治性强迫症的深部脑刺激：精神健康临床医生对候选因素的看法

The literature on the ethics of biobanking often overlooks the practical operations of biobanks. The ethics of stewardship requires that biobank resources are used to conduct beneficial science. Networked biobanks have emerged to increase the scientific benefit of biobank resources, but little is known about whether and how operations of networking may accomplish this goal.

R. Jean Cadigan

Roselle Ponsaran

Carla Rich

Josie Timmons

Kyle B. Brothers

Aaron J. Goldenberg

Supporting Stewardship: Funding, Utilization, and Sustainability as Ethical Concerns in Networked Biobanking

支持管理：网络生物银行中的资金、利用和可持续性作为伦理关注

To succeed, an accreditation process for clinical ethics fellowship programs (CEFPs) would need support from CEFP directors. To assess CEFP directors' opinions, we surveyed all 36 CEFP directors in the United States and Canada, achieving a 100% response rate. We found that support for accreditation is strong, with 30.6% strongly supportive, 44.4% supportive, 22.2% neutral, 2.8% opposed, and 0% strongly opposed. Most directors (77.8%) would be likely to apply for accreditation within the next five years regardless of the availability of government funding; even more (86.1%) would apply if government funding became available for accredited programs. Most directors thought that lack of a national accreditation process (75.0%), lack of agreed-upon standards (90.0%), and lack of funding for CEFPs (91.7%) were at least moderate problems for the field. When directors were asked what they thought was the greatest challenge or barrier to developing an accreditation process, many mentioned the diversity of programs and the challenge of achieving consensus on accreditation standards. Directors offered a variety of suggestions for how to overcome or manage challenges or barriers, including collecting data on existing programs, mirroring standards established for other health professions, and setting clear expectations on the need for compromise. When directors were asked how they expected that accreditation and government funding would affect their own programs, the field of clinical ethics, and patient care, directors mostly had very positive expectations; no director expected negative effects in any of these areas. Overall, this study provides evidence that developing an accreditation process for CEFPs would be both possible and desirable. Our findings have immediate practical implications for the field and will inform efforts that are already underway to establish an accreditation process for CEFPs.

Ellen Fox

Jason Adam Wasserman

Clinical Ethics Fellowship Programs in the United States and Canada: Program Directors’ Opinions About Accreditation and Funding

美国和加拿大临床伦理奖学金项目：项目主任对认证和资金的意见

ISSN	2329-4515, 2329-4523
h-index	25

涉及主题	心理学医学政治学生物法学社会学遗传学哲学病理经济精神科计算机科学社会心理学家庭医学认识论数学工程类生命伦理学医学教育护理部统计人类学工程伦理学社会科学替代医学内科学经济增长
出版信息	出版商: Taylor and Francis Ltd.，出版周期: ，期刊类型: journal，开源期刊: 否
基本数据	创刊年份: 2014，原创研究文献占比: 0.00%，自引率:N.A.， Gold OA占比: 0.00%

AJOB Empirical Bioethics

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Monitored and Cared for at Home? Privacy Concerns When Using Smart Home Health Technologies to Care for Older Persons

Ethical Healthcare Attitudes of Japanese Citizens and Physicians: Patient-Centered or Family-Centered?

A Critical Analysis of White Racial Framing and Comfort with Medical Research

Offering and Returning Secondary Findings in the Context of Exome Sequencing for Hearing Loss: Clinicians’ Views and Experiences

Ensuring the Scientific Value and Feasibility of Clinical Trials: A Qualitative Interview Study

Monitored and Cared for at Home? Privacy Concerns When Using Smart Home Health Technologies to Care for Older Persons

Talking About Suffering in the Intensive Care Unit

Deep Brain Stimulation for Childhood Treatment-Resistant Obsessive-Compulsive Disorder: Mental Health Clinician Views on Candidacy Factors

Supporting Stewardship: Funding, Utilization, and Sustainability as Ethical Concerns in Networked Biobanking

Clinical Ethics Fellowship Programs in the United States and Canada: Program Directors’ Opinions About Accreditation and Funding