Addiction, Identity, Morality.
CONCLUSIONS: In Study 1, we found that U.S. participants judged an agent who became addicted to drugs as being closer to "a completely different person" than "completely the same person" as the agent who existed prior to the addiction. In Studies 2-6, we investigated the intuitive basis for this result, finding that lay judgments of altered identity as a consequence of drug use and addiction are driven primarily by perceived negative changes in the moral character of drug users, who are seen as having deviated from their good true selves. PMID: 31012802 [PubMed - as supplied by publisher] (Source: A...
Source: AJOB Primary Research - April 25, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Bedside Rationing Under Resource Constraints-A National Survey of Ethiopian Physicians' Use of Criteria for Priority Setting.
Authors: Defaye FB, Danis M, Wakim P, Berhane Y, Norheim OF, Miljeteig I Abstract In low-income settings resource constraints force clinicians to make harsh choices. We examine the criteria Ethiopian physicians use in their bedside rationing decisions through a national survey at 49 public hospitals in Ethiopia. Substantial variation in weight given to different criteria were reported by the 587 participating physicians (response rate 91.7%). Young age, primary prevention, or the patient being the family's economic provider increased likelihood of offering treatment to a patient, while small expected benefit or low...
Source: AJOB Primary Research - April 21, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Older Teens' Understanding and Perceptions of Risks in Studies With Genetic Testing: A Pilot Study.
CONCLUSION: Results of this pilot study provide preliminary evidence that teens can identify and characterize key issues in the informed consent/assent process when it comes to the risks of research participation. These findings are consistent with other research regarding teens' perceptions and recommendations for genetic testing research. PMID: 31002290 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - April 21, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Preventive Misconception and Risk Behaviors in a Multinational HIV Prevention Trial.
CONCLUSIONS: A majority of trial participants expressed some belief that their risk of HIV infection would be reduced by using a vaginal ring, which may signal PM. However, such beliefs were not associated with adherence, condom use, or subsequent HIV infection, and there was variability across sites. Further work is needed to understand these findings. PMID: 31002583 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - April 21, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Enhancing Understanding of Moral Distress: The Measure of Moral Distress for Health Care Professionals.
This article describes the development and testing of a revision of the widely used Moral Distress Scale-Revised (MDS-R) to measure moral distress. METHODS: We revised the MDS-R by evaluating the combined data from 22 previous studies, assessing 301 write-in items and 209 root causes identified through moral distress consultation, and reviewing 14 recent publications from various professions in which root causes were described. The revised 27-item scale, the Measure of Moral Distress for Healthcare Professionals (MMD-HP), is usable by all HCPs in adult and pediatric critical, acute, or long-term acute care settings. We...
Source: AJOB Primary Research - April 21, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Broadening the Debate About Post-trial Access to Medical Interventions: A Qualitative Study of Participant Experiences at the End of a Trial Investigating a Medical Device to Support Type 1 Diabetes Self-Management.
Authors: Lawton J, Blackburn M, Rankin D, Werner C, Farrington C, Hovorka R, Hallowell N Abstract Increasing ethical attention and debate is focusing on whether individuals who take part in clinical trials should be given access to post-trial care. However, the main focus of this debate has been upon drug trials undertaken in low-income settings. To broaden this debate, we report findings from interviews with individuals (n = 24) who participated in a clinical trial of a closed-loop system, which is a medical device under development for people with type 1 diabetes that automatically adjusts blood glu...
Source: AJOB Primary Research - April 16, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Single-Patient Expanded Access Requests: IRB Professionals' Experiences and Perspectives.
CONCLUSIONS: A large majority of IRB professionals affiliated with the SMART IRB platform who responded to this survey felt IRB review of single-patient EA requests is important and that their IRBs were prepared to handle such requests. PMID: 30964737 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - April 11, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Developing clinical ethics support for an Australian Health Service: A survey of clinician's experiences and views.
CONCLUSIONS: A majority of clinical staff members surveyed have encountered ethically/legally challenging cases daily for which they have often sought additional advice. This study indicates that many clinical staff members would welcome some form of additional clinical ethics support including advice and education. PMID: 30908109 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - March 27, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Impartiality and infectious disease: Prioritizing individuals versus the collective in antibiotic prescription.
CONCLUSIONS: Participants' attitudes were more oriented to society and sensitive to collective responsibility when informed about the social costs of antibiotic use and when considered from a third-person rather than first-person perspective. That is, as participants came closer to taking the perspective of an informed and impartial "ideal observer," their support for prioritizing society increased. Our findings suggest that, insofar as antibiotic policies and practices should be informed by attitudes that are impartial and well-informed, there is significant support for prioritizing society. PMID: 30908114 [...
Source: AJOB Primary Research - March 27, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Framing the diagnosis and treatment of absolute uterine factor infertility: Insights from in-depth interviews with uterus transplant trial participants.
CONCLUSIONS: The ways in which women with AUFI conceptualize this condition in their lives and choices around UTx and participating in a study of the procedure are multifaceted and textured. These perspectives are critical to understanding its ethical, legal, and social implications. PMID: 30855220 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - March 13, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Values, Quality, and Evaluation in Ethics Consultation.
Conclusions: Ethics consultation can help clinicians clarify their own values and helps them clarify the values of patients and patients' families. Ethics consultation offers meaningful support when clinicians face ethically challenging cases, provides an opportunity to address moral distress, and is viewed favorably by those who experience the resource. PMID: 30854408 [PubMed] (Source: AJOB Primary Research)
Source: AJOB Primary Research - March 13, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Moral distress in medical student reflective writing.
Authors: Camp M, Sadler J Abstract PURPOSE: Moral distress occurs when one identifies an ethically appropriate course of action but cannot carry it out. In this conceptualization, medical students may be particularly vulnerable to moral distress, but the literature on moral distress in medical trainees remains sparse. METHOD: Using content analysis of 802 reflective essays written by third-year medical students, the authors analyzed for the presence of moral distress and other ethical themes. The authors then used chi-squared analysis to determine which ethical themes were statistically associated with moral di...
Source: AJOB Primary Research - February 24, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Cameras on beds: The ethics of surveillance in nursing home rooms.
Authors: Berridge C, Halpern J, Levy K Abstract Surveillance cameras are increasingly being deployed in nursing homes and assisted living facilities, with insufficient attention to what is ethically fraught about this way of assuaging concerns about abuse and other personnel challenges. With seven state laws now regulating camera monitoring and more on the way, it is urgent for us to consider the ethical implications of how we use technology to keep older adults safe. Drawing on findings from the first facility survey on this topic, we address three ethical issues: the risk that in-room cameras pose to residents' p...
Source: AJOB Primary Research - February 24, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

A content analysis of the views of genetics professionals on race, ancestry, and genetics.
Authors: Nelson SC, Yu JH, Wagner JK, Harrell TM, Royal CD, Bamshad MJ Abstract Over the past decade, the proliferation of genetic studies on human health and disease has reinvigorated debates about the appropriate role of race and ancestry in research and clinical care. Here we report on the responses of genetics professionals to a survey about their views on race, genetics, and ancestry across the domains of science, medicine, and society. Through a qualitative content analysis of free-text comments from 515 survey respondents, we identified key themes pertaining to multiple meanings of race, the use of race as a...
Source: AJOB Primary Research - January 5, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.
CONCLUSIONS: Although additional studies in diverse populations are needed, policies governing return of genomic results should consider how families understand genomic data, how they value confidentiality within the family, and whether they endorse an ethics of sharing. A focus on respect for individual privacy-without attention to how the broad social and cultural context shapes preferences within families-cannot be the sole foundation of policy. PMID: 30596322 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - January 1, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Assessing Patient Perspectives on Receiving Bad News: A Survey of 1337 Patients With Life-Changing Diagnoses.
CONCLUSION: SPIKES is the most commonly taught framework for breaking bad news in Canadian medical schools. This is the first work to demonstrate that the existing guidelines in breaking bad news such as SPIKES largely reflect the perspectives of many patient groups, as assessed by quantitative and qualitative measures. We highlight the most important components of SPIKES to patients and identify five additional suggestions to aid clinicians in breaking bad news. PMID: 30596341 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - January 1, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Genes wide open: Data sharing and the social gradient of genomic privacy.
This study reports on 13 semistructured in-depth interviews to qualitatively explore the experiences of individuals who publicly shared their direct-to-consumer genetic testing results on the platform openSNP. In particular, we focused on interviewees' understanding of privacy. Participants reported that the likelihood and the magnitude of privacy harms depend on gender, ethnicity, sexual orientation, the stigma associated with certain clinical conditions, the existence of adequate legislation, and the nature of national health care systems. Some participants expressed the view that those who enjoy higher socioeconomic sta...
Source: AJOB Primary Research - January 1, 2019 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Data and tissue research without patient consent: A qualitative study of the views of research ethics committees in New Zealand.
CONCLUSION: IRB/REC members have rich experience of moral reasoning regarding research ethics, especially in areas where the official guidance is underdeveloped. Their insights can contribute to the academic literature and suggest improvements in the review process and in ethical regulation and guidelines. PMID: 30407144 [PubMed - in process] (Source: AJOB Primary Research)
Source: AJOB Primary Research - November 9, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Comparison of philosophical concerns between professionals and the public regarding two psychiatric treatments.
CONCLUSIONS: These findings reveal some of the similarities and discrepancies in how philosophical issues associated with psychiatric treatments are discussed in professional circles and among the public. Further research into what causes these discrepancies is crucial. PMID: 30398397 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - November 8, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

"I want us to be a normal family": Toward an understanding of the functions of anonymity among U.S. oocyte donors and recipients.
CONCLUSION: As gamete donation increasingly moves away from the practice of anonymity, examining why anonymity matters to stakeholders will be helpful in devising strategies to successfully implement identity-release options. PMID: 30398412 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - November 8, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Ethical understandings of proxy decision making for research involving adults lacking capacity: A systematic review (framework synthesis) of empirical research.
CONCLUSIONS: The findings from this systematic review challenge the accepted reductionist account of proxy decision-making. Decision-making by research proxies is highly contextualized and multifactorial in nature. The choice of proxy and the relational features of decision-making play a fundamental role: both in providing the proxy's authority as decision-maker, and guiding the decision-making process. The conceptual framework describes the relationship between the framing criteria used by the proxy, and the active elements of decision-making. Further work to develop, and empirically test the proposed framework is needed....
Source: AJOB Primary Research - October 16, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Reliance agreements and single IRB review of multisite research: Concerns of IRB members and staff.
Authors: Lidz CW, Pivovarova E, Appelbaum P, Stiles DF, Murray A, Klitzman RL Abstract The new National Institutes of Health (NIH) Policy on the Use of a Single Institutional Review Board (sIRB) for Multi-Site Research was adopted primarily to simplify and speed the review of complex multisite clinical trials. However, speeding review requires overcoming a number of obstacles. Perhaps the most substantial obstacle is the time and effort needed to develop reliance agreements among the participating sites. We conducted 102 semistructured interviews with sIRB personnel, including directors, chairs, reviewers, and staf...
Source: AJOB Primary Research - October 6, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Conflicts of interest policies for authors, peer reviewers, and editors of bioethics journals.
CONCLUSION: Compared to other studies of biomedical journals, a much lower percentage of bioethics journals have COI policies and these vary substantially in content. The bioethics publishing community needs to develop robust policies for authors, peer reviewers, and editors and these should be made publicly available to enhance academic and public trust in bioethics scholarship. PMID: 30248000 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - September 26, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Parents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey.
CONCLUSIONS: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. PMID: 30240342 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - September 23, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Freezing fertility or freezing false hope? A content analysis of social egg freezing in U.S. print media.
Authors: Campo-Engelstein L, Aziz R, Darivemula S, Raffaele J, Bhatia R, Parker WM Abstract In 2012, the American Society for Reproductive Medicine (ASRM) lifted the experimental label on oocyte preservation, but cautioned against women using it to avoid age-related infertility, known as social egg freezing (SEF). In 2014, Facebook and Apple announced that they would offer SEF as a workplace benefit. Within the context of a rapidly growing market for SEF, we were interested in how these two decisions affected media discussions, given that such discourse can strongly influence public perceptions and behaviors. We us...
Source: AJOB Primary Research - September 22, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Taking societal cost into clinical consideration: U.S. physicians' views.
CONCLUSION: Physicians were nearly evenly divided regarding whether they should help control societal costs when caring for individual patients, but a strong majority agreed that physicians should refuse costly interventions that have little chance of benefit. PMID: 30160616 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - August 31, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Cross-cultural perspectives on decision making regarding noninvasive prenatal testing: A comparative study of Lebanon and Quebec.
Authors: Haidar H, Vanstone M, Laberge AM, Bibeau G, Ghulmiyyah L, Ravitsky V Abstract Noninvasive prenatal testing (NIPT), based on the detection of cell-free fetal DNA in maternal blood, has transformed the landscape of prenatal care by offering clinical benefits (noninvasive, high specificity and sensitivity, early detection of abnormalities) compared to existing prenatal screening tests. NIPT has expanded rapidly and is currently commercially available in most of the world. As NIPT spreads globally, culturally sensitive and ethically sound implementation will require policies that take into consideration the so...
Source: AJOB Primary Research - June 1, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Moving Beyond the Theoretical: Medical Students' Desire for Practical, Role-Specific Ethics Training.
CONCLUSION: We recommend several strategies that can begin to address these findings. The use of roleplaying with standardized patients can enable students to practice engagement with ethical issues. Conventional ethics courses can focus more on action-based pedagogy and instruction in conflict management techniques. Finally, clear structures for reporting and seeking advice and support for addressing ethical issues can lessen students' apprehension to act on ethical concerns. PMID: 29727598 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - May 8, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

"I didn't have anything to decide, I wanted to help my kids" - An interview-based study of consent procedures for sampling human biological material for genetic research in rural Pakistan.
CONCLUSIONS: We argue that while building and maintaining trusting relationships in research is important - not least in developing countries - strategies that serve this endeavor should be supplemented with efforts to ensure proper provision and understanding of relevant information, specifically about the nature of research and measures for individual consent and opt-out. PMID: 29722609 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - May 5, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

To Report or Not to Report: Exploring Healthy Volunteers' Rationales for Disclosing Adverse Events in Phase I Drug Trials.
CONCLUSIONS: Our findings demonstrate that participants' reporting behavior is more complex than previous portraits of healthy volunteers have suggested. Rather than finding participants who were so focused on the financial compensation that they were willing to subvert trial results, our study indicates that participants are willing in most cases to forgo their full compensation if they believe not reporting their symptoms jeopardizes their own safety or the validity of the research. PMID: 29693508 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - April 26, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

How Acceptable Is Paternalism? A Survey-Based Study of Clinician and Non-Clinician Opinions on Paternalistic Decision Making.
Authors: Bailoor K, Valley T, Perumalswami C, Shuman AG, DeVries R, Zahuranec DB Abstract We conducted an empirical study to explore clinician and lay opinions on the acceptability of physician paternalism. Respondents read a vignette describing a patient with brain hemorrhage facing urgent surgery that would be life-saving but result in long-term severe disability. Cases were randomized to show either low or high surrogate distress and certain or uncertain prognosis, with respondents rating the acceptability of not offering brain surgery. Clinicians (N = 169) were more likely than non-clinicians (N = 649) to find ...
Source: AJOB Primary Research - April 11, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Patient Perspectives on Compensation for Biospecimen Donation.
CONCLUSIONS: The majority of biospecimen donors stated they should not be paid for tissue bank participation. However, a minority believe they should be paid for donating tissue if the tissue is used in revenue-generating projects. These results provide some support for the current biobanking practice of not providing compensation. PMID: 29611768 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - April 5, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

An Empirical Assessment of the Short Term Impacts of a Reading of Deborah Zoe Laufer's Drama Informed Consent on Attitudes and Intentions to Participate in Genetic Research.
This study assessed the short-term impact of the play "Informed Consent" by Deborah Zoe Laufer (a fictionalized look at the controversy over specimens collected from the Havasupai Tribe for diabetes research in 1989) on perceptions of trust, willingness to donate biospecimens, attitudes toward harm and privacy among the medical and undergraduate students, faculty and the public in the intermountain west. METHODS: Surveys were administered before and after a staged reading of the play by professional actors. Survey items included the short form Trust in Medical Researchers, and single item questions about grou...
Source: AJOB Primary Research - March 9, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Undisclosed Conflicts of Interests among Biomedical Textbook Authors.
CONCLUSION: An appreciable subset of biomedical authors have patents and have received remuneration from medical product companies and this information is not disclosed to readers. These findings indicate that full transparency of financial pCoI should become a standard practice among the authors of biomedical educational materials. PMID: 29400625 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - February 7, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

A Paradigm for Understanding Trust and Mistrust in Medical Research: The Community VOICES Study.
CONCLUSIONS: The four domains identified in the analysis provide a framework for understanding specific areas of research trust/mistrust amongst disparate study populations. This model offers a conceptual basis for the design of tailored interventions that target specific groups to promote trust of individual researchers and research institutions as well as to facilitate broader research participation. PMID: 29368998 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - January 27, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Children's Perspectives of the Benefits and Burdens of Research Participation.
CONCLUSIONS: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process. PMID: 29369013 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - January 27, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Would you be willing to zap your child's brain? Public perspectives on parental responsibilities and the ethics of enhancing children with transcranial direct current stimulation.
CONCLUSIONS: The wider public appears to think that crossing the line from treatment to enhancement with tDCS would not be in a child's best interests. However, an important alternative interpretation of our results is that lay people may be willing to use enhancers that matched their preference for 'natural' enhancers. A ban on the safe use of tDCS for enhancing non-fundamental traits would be unlikely to garner public support. Nonetheless, it could become important to regulate tDCS in order to prevent misuse on children, because individuals reluctant to enhance may be likely to give in to implicit coercion to enhance the...
Source: AJOB Primary Research - January 18, 2018 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

"God Is The Giver And Taker Of Life". Muslim Beliefs And Attitudes Regarding Assisted Suicide And Euthanasia.
"God Is The Giver And Taker Of Life". Muslim Beliefs And Attitudes Regarding Assisted Suicide And Euthanasia. AJOB Empir Bioeth. 2017 Dec 21;:0 Authors: Ahaddour C, Van den Branden S, Broeckaert B Abstract In the context of the Belgian debates on end-of-life care, the views of Muslims remain understudied. The aim of this article is twofold. First, we seek to document the relation between contemporary normative Muslim ideas on assisted suicide and voluntary euthanasia on the one hand and real-world views and attitudes of Muslims living in Belgium on the other hand. Second, we aim to identify w...
Source: AJOB Primary Research - December 23, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Understanding variations in secondary findings reporting practices across U.S. genome sequencing laboratories.
CONCLUSIONS: Nearly all laboratories in our study voluntarily adopted ACMG's recommendations, but their actual practices varied considerably and were informed by laboratory-specific judgments about clinical utility and patient benefit. Our findings offer a compelling example of standardization as a complex process that rarely leads simply to uniformity of practice. As laboratories take on a more prominent role in decisions about the return of genetic information, strategies are needed to inform patients, families, and clinicians about the differences between laboratories' practices and ensure that the consent process promp...
Source: AJOB Primary Research - November 15, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives.
Authors: Nebeker C, Harlow J, Giacinto-Espinoza R, Orozco-Linares R, Bloss CS, Weibel N Abstract Vast quantities of personal health information and private identifiable information are being created through mobile apps, wearable sensors, and social networks. While new strategies and tools for obtaining health data have expanded researchers' abilities to design and test personalized and adaptive health interventions, the deployment of pervasive sensing and computational techniques to gather research data is raising ethical challenges for Institutional Review Boards (IRBs) charged with protecting research participant...
Source: AJOB Primary Research - November 12, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Views of Clinical Trial Participants on the Readability and Their Understanding of Informed Consent Documents.
CONCLUSIONS: These findings suggest individual clinical trial participants should be engaged on their views of an ICD, for doing so is part of informed consent as a process rather than consent being merely focused on written information. Such participant-specific engagement should guide whether family and friends, videos, pictures, additional reading material and FAQ-sheets would be of assistance in improving understanding. PMID: 29111872 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - November 9, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Epistemic injustice in dementia and autism patient organizations - an empirical analysis.
Authors: Jongsma K, Spaeth E, Schicktanz S Abstract Patient organizations (POs) represent patient collectives in health care policy. The inclusion of people with a 'neuro-psychiatric' condition poses a particular challenge for the organizational processes and political representation of such collectives. In recent years, new POs (POs of) have been established in the field of autism spectrum disorder and dementia that advocate a different agenda and have a different organizational structure than traditional POs (POs for). The divide between these two types of POs indicates a different standpoint with regard to who s...
Source: AJOB Primary Research - November 9, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

"Will They be Good Enough Parents?": Ethical Dilemmas, Views and Decisions Among Assisted Reproductive Technology (ART) Providers.
CONCLUSIONS: These data, the first to explore several critical aspects of IVF providers' views and decision-making about assessing the quality of patients' potential future parenting, have critical implications for future practice, education, research and guidelines. Further empirical and normative scholarship, and guidelines are needed to help clarify expectations, processes and possible approaches to aid providers and patients. PMID: 29058532 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - October 24, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Counseling parents at risk of delivery of an extremely premature infant: Differing strategies.
CONCLUSIONS: Expert neonatologists are deeply concerned that parents understand the decision facing them. However, they differ on what information they offer and how they balance parents' need for cognitive and affective support. They expressed more concern about parents' decisional regret should their child survive resuscitation, but have severe disability, than about decisional regret after foregoing resuscitation. PMID: 29048264 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - October 20, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Same behavior, different provider: American medical students' attitudes toward reporting risky behaviors committed by doctors, nurses, and classmates.
Authors: Aggarwal S, Kheriaty A Abstract The bioethics literature lacks findings about medical students' attitudes toward reporting risky behaviors that can cause error or reduce the perceived quality of health care. A survey was administered to 159 medical students to assess their likelihood to directly approach and to report various providers-a physician, nurse, or medical student-for three behaviors (poor hand hygiene, intoxication, or disrespect of patients). For the same behavior, medical students were significantly more likely to approach a classmate, followed by a nurse and then a doctor (p
Source: AJOB Primary Research - October 7, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

How should we deal with misattributed paternity? A survey of lay public attitudes.
CONCLUSIONS: This sample of the general public showed attitudes that were, at least to some degree, at variance with some professional guidelines. We give arguments for why at least some of these attitudes might be justified. We argue that case-specific judgements should be made and outline some of the relevant ethical considerations. While general guidelines ought to be considered, context-specific moral judgements cannot be avoided. PMID: 28960139 [PubMed - as supplied by publisher] (Source: AJOB Primary Research)
Source: AJOB Primary Research - September 30, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Do Patients Want their Families or their Doctors to Make Treatment Decisions in the Event of Incapacity, and Why?
CONCLUSIONS: Contrary to current practice, 33.9% of respondents who had not designated a surrogate, and 21.8% of those who had designated a surrogate indicated that they wanted their doctors to make treatment decisions for them in the event of decisional incapacity. Moreover, many of those who wanted their surrogates or family members to make treatment decisions explained this preference by citing a belief that loved ones knew the patient's treatment preferences. This belief is undermined by prior research which suggests that surrogates and family members frequently are unable to predict which treatments their charges woul...
Source: AJOB Primary Research - September 29, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

The interactions of Canadian ethics consultants with health care managers and governing boards during times of crisis.
CONCLUSIONS: Canadian ethics consultants tend to believe that they have valuable skills to offer in the management of organizational crisis situations. Most of the ethics consultants we interviewed believed that they play an important role in this regard. PMID: 28949838 [PubMed - in process] (Source: AJOB Primary Research)
Source: AJOB Primary Research - September 29, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Primary care physicians' views about gatekeeping in clinical research recruitment: A qualitative study.
CONCLUSION: Our data show evidence of gatekeeping by primary care physicians when deciding to participate in, and recruit their patients to, clinical studies. We argue that such gatekeeping is a way of addressing the dual and sometimes conflicting roles of clinician and researcher. It need not be ethically problematic, but primary care physicians should be reflexive about their recruitment practices and biases. In addition, this form of gatekeeping should be explicitly recognized in protocol design and the analysis of trial findings. PMID: 28949839 [PubMed - in process] (Source: AJOB Primary Research)
Source: AJOB Primary Research - September 29, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research

Adolescent oncofertility discussions: Recommendations from a systematic literature review.
CONCLUSIONS: Based upon the principles of beneficence, respect for autonomy, and justice, we endorse several recommendations for oncofertility discussions with adolescents and their parents, including having a specific professional on the health care team initiate these discussions with all newly diagnosed patients; regularly doing so before, during, and after treatment; allowing adolescents to decide for themselves whom they wish to include in such discussions; employing various forms of communication; obtaining both adolescent assent and parental consent for fertility preservation (FP) procedures, especially at each stag...
Source: AJOB Primary Research - September 29, 2017 Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research