93 results match your criteria AJOB empirical bioethics[Journal]


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.

AJOB Empir Bioeth 2019 Apr 15:1-13. Epub 2019 Apr 15.

e Wellcome Centre for Ethics and Humanities and the Ethox Centre, Nuffield Department of Population Health, Big Data Institute , University of Oxford , Oxford , United Kingdom.

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 glucose to help keep it within clinically recommended ranges. Read More

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https://www.tandfonline.com/doi/full/10.1080/23294515.2019.1
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http://dx.doi.org/10.1080/23294515.2019.1592264DOI Listing
April 2019
7 Reads

Single-Patient Expanded Access Requests: IRB Professionals' Experiences and Perspectives.

AJOB Empir Bioeth 2019 Apr 9:1-12. Epub 2019 Apr 9.

a Division of Medical Ethics, Department of Population Health , NYU School of Medicine, NYU Langone Health , New York , New York , USA.

Background: U.S. physicians may treat a patient with an investigational drug outside of a clinical trial by using the expanded access (EA) pathway or the recently created federal right to try (RTT) pathway. Read More

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http://dx.doi.org/10.1080/23294515.2019.1577192DOI Listing
April 2019
3 Reads

Impartiality and infectious disease: Prioritizing individuals versus the collective in antibiotic prescription.

AJOB Empir Bioeth 2019 Jan-Mar;10(1):63-69. Epub 2019 Mar 25.

b Oxford Uehiro Centre for Practical Ethics, Faculty of Philosophy , University of Oxford , Oxford , United Kingdom.

Background: Antimicrobial resistance (AMR) is a global public health disaster driven largely by antibiotic use in human health care. Doctors considering whether to prescribe antibiotics face an ethical conflict between upholding individual patient health and advancing public health aims. Existing literature mainly examines whether patients awaiting consultations desire or expect to receive antibiotic prescriptions, but does not report views of the wider public regarding conditions under which doctors should prescribe antibiotics. Read More

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http://dx.doi.org/10.1080/23294515.2019.1576799DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6446247PMC

Developing clinical ethics support for an Australian Health Service: A survey of clinician's experiences and views.

AJOB Empir Bioeth 2019 Jan-Mar;10(1):44-54. Epub 2019 Mar 25.

a Research Directorate , University Hospital Geelong, Barwon Health , Geelong , Australia.

Background: International developments suggest that providing clinical ethics services to help clinicians negotiate ethical issues that arise in clinical practice is beneficial and reflects best practice in promoting high ethical standards and patient-centered care. The aim of this study was to explore the needs and experiences of clinical staff members to inform the development of future clinical ethics support.

Methods: Health professionals at a large regional health service completed an online survey containing questions about the frequency of ethical and legal issues encountered in clinical practice, the type of situations that gave rise to the ethical and/or legal uncertainty or concern, how clinicians currently address these issues, and what support would be welcome. Read More

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http://dx.doi.org/10.1080/23294515.2019.1576800DOI Listing
March 2019
3 Reads

Framing the diagnosis and treatment of absolute uterine factor infertility: Insights from in-depth interviews with uterus transplant trial participants.

AJOB Empir Bioeth 2019 Jan-Mar;10(1):23-35. Epub 2019 Mar 11.

a Department of Ob/Gyn & Women's Health Institute , Cleveland Clinic , Cleveland , Ohio.

Background: Despite procedural innovations and increasing numbers of uterus transplant attempts worldwide, the perspectives of uterus transplant (UTx) trial participants are lacking.

Methods: We conducted a mixed-methods study with women with absolute uterine factor infertility (AUFI). Participants included women who had previously contacted the Cleveland Clinic regarding the Uterine Transplant Trial and met the initial eligibility criteria for participation. Read More

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http://dx.doi.org/10.1080/23294515.2019.1572672DOI Listing

Cameras on beds: The ethics of surveillance in nursing home rooms.

AJOB Empir Bioeth 2019 Jan-Mar;10(1):55-62. Epub 2019 Feb 22.

c Cornell University , Information Science , Ithaca , New York , USA.

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' privacy and dignity, the risk of undermining care workers' sense of being fiduciaries for residents, and the probable extension of camera use by facilities to monitor staff and residents. Read More

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http://dx.doi.org/10.1080/23294515.2019.1568320DOI Listing
February 2019

Moral distress in medical student reflective writing.

AJOB Empir Bioeth 2019 Jan-Mar;10(1):70-78. Epub 2019 Feb 22.

a University of Texas Southwestern Medical Center , Dallas , Texas , USA.

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. Read More

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http://dx.doi.org/10.1080/23294515.2019.1570385DOI Listing
February 2019

A content analysis of the views of genetics professionals on race, ancestry, and genetics.

AJOB Empir Bioeth 2018 Oct-Dec;9(4):222-234. Epub 2019 Jan 4.

b Department of Pediatrics , University of Washington.

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 proxy for genetic ancestry, and the relevance of race and ancestry to health. Read More

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http://dx.doi.org/10.1080/23294515.2018.1544177DOI Listing
January 2019
1 Read

Genes wide open: Data sharing and the social gradient of genomic privacy.

AJOB Empir Bioeth 2018 Oct-Dec;9(4):207-221. Epub 2018 Dec 31.

b Department of Health Sciences and Technology , ETH Zurich.

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. Read More

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http://dx.doi.org/10.1080/23294515.2018.1550123DOI Listing
December 2018

Assessing Patient Perspectives on Receiving Bad News: A Survey of 1337 Patients With Life-Changing Diagnoses.

AJOB Empir Bioeth 2019 Jan-Mar;10(1):36-43. Epub 2018 Dec 31.

c Department of Health Research Methods, Evidence, and Impact and Department of Medicine , McMaster University.

Background: Guidelines for breaking bad news are largely directed at and validated in oncology patients, based on expert opinion, and neglect those with other diagnoses. We sought to determine whether existing guidelines for breaking bad news, particularly SPIKES, are consistent with patient preferences across patient populations.

Methods: Patients from an online community responded to 5 open-ended and 11 Likert-scale questions identifying their preferences in having bad news delivered. Read More

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https://www.tandfonline.com/doi/full/10.1080/23294515.2018.1
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http://dx.doi.org/10.1080/23294515.2018.1543218DOI Listing
December 2018
2 Reads

Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.

AJOB Empir Bioeth 2019 Jan-Mar;10(1):1-22. Epub 2018 Dec 31.

g Program in Bioethics , University of California, San Francisco.

Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands' biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband's results to family members, including after the proband's death?

Methods: Preferences were elicited using interviews and a survey. Read More

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https://www.tandfonline.com/doi/full/10.1080/23294515.2018.1
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http://dx.doi.org/10.1080/23294515.2018.1546241DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6443426PMC
December 2018
1 Read

Data and tissue research without patient consent: A qualitative study of the views of research ethics committees in New Zealand.

AJOB Empir Bioeth 2018 Jul-Sep;9(3):143-153

b Department of Philosophy , University of Otago , New Zealand.

Purpose: Secondary use of clinical tissue and data is an increasingly important platform for health research. Many jurisdictions allow research ethics committees (RECs) or institutional review boards (IRBs) the flexibility to waive the requirement for patient consent for secondary research. But most RECs/IRBs conduct their meetings "behind closed doors" and their decision-making processes are opaque to researchers and academics. Read More

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https://www.tandfonline.com/doi/full/10.1080/23294515.2018.1
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http://dx.doi.org/10.1080/23294515.2018.1518938DOI Listing
November 2018
9 Reads

"I want us to be a normal family": Toward an understanding of the functions of anonymity among U.S. oocyte donors and recipients.

AJOB Empir Bioeth 2018 Oct-Dec;9(4):235-251. Epub 2018 Nov 6.

c The Ronald O. Perelman and Claudia Cohen Center for Reproductive Medicine , Weill Cornell Medical College.

Background: Anonymity remains the more common practice in gamete donations, but legislation prohibiting anonymity with a goal of protecting donor-conceived children's right to know their genetic origins is becoming more common. However, given the dearth of research investigating the function of anonymity for donors and recipients, it is unclear whether these policies will accomplish their goals. The aim of this study was to explore experiences with anonymity among oocyte donors and recipients who participated in an anonymous donor oocyte program and to understand the ways in which anonymity functions for them. Read More

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http://dx.doi.org/10.1080/23294515.2018.1528308DOI Listing
November 2018

Comparison of philosophical concerns between professionals and the public regarding two psychiatric treatments.

AJOB Empir Bioeth 2018 Oct-Dec;9(4):252-266. Epub 2018 Nov 6.

b Lyman Briggs College , Michigan State University , East Lansing , Michigan , USA.

Background: Psychiatric interventions are a contested area in medicine, not only because of their history of abuses, but also because their therapeutic goal is to affect emotions, thoughts, beliefs, and behaviors that are regarded as pathological. Because psychiatric interventions affect characteristics that seem central to who we are, they raise issues regarding identity, autonomy, and personal responsibility for one's own well-being. Our study addresses two questions: (1) Do the public and academic researchers understand the philosophical stakes of these technologies in the same way? Following from this, (2) to what extent does the specific type of psychiatric technology affect the issues these two groups raise? This study compares how ethical issues regarding neurosurgical and pharmaceutical psychiatric interventions are discussed among the public and in the professional community of academic medicine and bioethics. Read More

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http://dx.doi.org/10.1080/23294515.2018.1512534DOI Listing
November 2018
1 Read

Ethical understandings of proxy decision making for research involving adults lacking capacity: A systematic review (framework synthesis) of empirical research.

AJOB Empir Bioeth 2018 Oct-Dec;9(4):267-286. Epub 2018 Oct 15.

a Division of Population Medicine , Cardiff University , Cardiff , UK.

Background: Research involving adults lacking mental capacity relies on the involvement of a proxy or surrogate, although this raises a number of ethical concerns. Empirical studies have examined attitudes towards proxy decision-making, proxies' authority as decision-makers, decision accuracy, and other relevant factors. However, a comprehensive evidence-based account of proxy decision-making is lacking. Read More

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https://www.tandfonline.com/doi/full/10.1080/23294515.2018.1
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http://dx.doi.org/10.1080/23294515.2018.1513097DOI Listing
October 2018
14 Reads

Reliance agreements and single IRB review of multisite research: Concerns of IRB members and staff.

AJOB Empir Bioeth 2018 Jul-Sep;9(3):164-172. Epub 2018 Oct 4.

b Department of Psychiatry, Columbia University.

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. Read More

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https://www.tandfonline.com/doi/full/10.1080/23294515.2018.1
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http://dx.doi.org/10.1080/23294515.2018.1510437DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6309766PMC
October 2018
10 Reads

Conflicts of interest policies for authors, peer reviewers, and editors of bioethics journals.

AJOB Empir Bioeth 2018 Jul-Sep;9(3):194-205. Epub 2018 Sep 24.

d Department of Social and Preventive Medicine, School of Public Health , University of Montreal.

Background: In biomedical research, there have been numerous scandals highlighting conflicts of interest (COIs) leading to significant bias in judgment and questionable practices. Academic institutions, journals, and funding agencies have developed and enforced policies to mitigate issues related to COI, especially surrounding financial interests. After a case of editorial COI in a prominent bioethics journal, there is concern that the same level of oversight regarding COIs in the biomedical sciences may not apply to the field of bioethics. Read More

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http://dx.doi.org/10.1080/23294515.2018.1510859DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6310149PMC
September 2018

Parents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey.

AJOB Empir Bioeth 2018 Jul-Sep;9(3):128-142. Epub 2018 Sep 21.

x Division of Genetics and Genomics and the Manton Center for Orphan Diseases Research , Boston Children's Hospital.

Background: The factors influencing parents' willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents' willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness.

Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Read More

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http://dx.doi.org/10.1080/23294515.2018.1505783DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6354766PMC
September 2018
5 Reads

Freezing fertility or freezing false hope? A content analysis of social egg freezing in U.S. print media.

AJOB Empir Bioeth 2018 Jul-Sep;9(3):181-193. Epub 2018 Sep 20.

d Health and Human Sciences and Public Health Programs, Albany College of Pharmacy and Health Sciences.

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. Read More

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http://dx.doi.org/10.1080/23294515.2018.1509153DOI Listing
September 2018
1 Read

Taking societal cost into clinical consideration: U.S. physicians' views.

AJOB Empir Bioeth 2018 Jul-Sep;9(3):173-180. Epub 2018 Aug 30.

a Trent Center for Bioethics, Humanities & History of Medicine , Duke University School of Medicine.

Background: Recent campaigns (e.g., the American Board of Internal Medicine Foundation's Choosing Wisely) reflect the increasing role that physicians are expected to have in stewarding health care resources. Read More

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http://dx.doi.org/10.1080/23294515.2018.1498408DOI Listing
August 2018
19 Reads

Cross-cultural perspectives on decision making regarding noninvasive prenatal testing: A comparative study of Lebanon and Quebec.

AJOB Empir Bioeth 2018 Apr-Jun;9(2):99-111

g Bioethics Program, Department of Social and Preventive Medicine , School of Public Health, Université de Montréal.

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 social and cultural context of prenatal testing decisions. Read More

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http://dx.doi.org/10.1080/23294515.2018.1469551DOI Listing
May 2018
6 Reads

Moving beyond the theoretical: Medical students' desire for practical, role-specific ethics training.

AJOB Empir Bioeth 2018 Jul-Sep;9(3):154-163. Epub 2018 Jul 6.

a Department of Medical Ethics and Health Policy , University of Pennsylvania.

Background: It has been widely reported that medical trainees experience situations with profound ethical implications during their clinical rotations. To address this, most U.S. Read More

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http://dx.doi.org/10.1080/23294515.2018.1472149DOI Listing

"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.

AJOB Empir Bioeth 2018 Jul-Sep;9(3):113-127. Epub 2018 Jun 28.

b Section for Consumption, Bioethics, and Governance , University of Copenhagen.

Background: Individual, comprehensive, and written informed consent is broadly considered an ethical obligation in research involving the sampling of human material. In developing countries, however, local conditions, such as widespread illiteracy, low levels of education, and hierarchical social structures, complicate compliance with these standards. As a result, researchers may modify the consent process to secure participation. Read More

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http://dx.doi.org/10.1080/23294515.2018.1472148DOI Listing
June 2018
2 Reads

To report or not to report: Exploring healthy volunteers' rationales for disclosing adverse events in Phase I drug trials.

AJOB Empir Bioeth 2018 Apr-Jun;9(2):82-90

b Center for Bioethics and Department of Social Medicine , University of North Carolina at Chapel Hill.

Background: Phase I trials test the safety and tolerability of investigational drugs and often use healthy volunteers as research participants. Adverse events (AEs) are collected in part through participants' self-reports of any symptoms they experience during the trial. In some cases, experiencing AEs can result in trial participation being terminated. Read More

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http://dx.doi.org/10.1080/23294515.2018.1469552DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5976538PMC

How acceptable is paternalism? A survey-based study of clinician and nonclinician opinions on paternalistic decision making.

AJOB Empir Bioeth 2018 Apr-Jun;9(2):91-98. Epub 2018 May 3.

c Center for Bioethics and Social Sciences in Medicine, Michigan Medicine.

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 lifesaving but would 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. Read More

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http://dx.doi.org/10.1080/23294515.2018.1462273DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5996773PMC
May 2018
3 Reads

Patient perspectives on compensation for biospecimen donation.

AJOB Empir Bioeth 2018 Apr-Jun;9(2):77-81. Epub 2018 Apr 26.

a Department of Hematology and Medical Oncology , Winship Cancer Institute, Emory University School of Medicine , Atlanta , Georgia , USA.

Background: The purpose of this study was to determine whether biospecimen donors believe they should receive compensation. This is the first study to report biospecimen donors' views on compensation and can potentially improve informed consent and recruitment practices.

Methods: Researchers asked patients undergoing surgical removal of tissue to donate biological materials to a biobank; the request was made at their presurgical appointment or in the preoperative clinic of the Emory University Hospital. Read More

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http://dx.doi.org/10.1080/23294515.2018.1460633DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6299829PMC
April 2018
2 Reads

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.

AJOB Empir Bioeth 2018 Apr-Jun;9(2):69-76. Epub 2018 Apr 6.

c University of Texas A&M , College Station , Texas , USA.

Objective: 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, and 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 group identity, ethics of genetic testing in children, and willingness to donate biospecimens. Read More

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http://dx.doi.org/10.1080/23294515.2018.1449771DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6092928PMC
April 2018
6 Reads

Undisclosed conflicts of interest among biomedical textbook authors.

AJOB Empir Bioeth 2018 Apr-Jun;9(2):59-68. Epub 2018 Mar 5.

g Biochemistry Program , Bowdoin College.

Background: Textbooks are a formative resource for health care providers during their education and are also an enduring reference for pathophysiology and treatment. Unlike the primary literature and clinical guidelines, biomedical textbook authors do not typically disclose potential financial conflicts of interest (pCoIs). The objective of this study was to evaluate whether the authors of textbooks used in the training of physicians, pharmacists, and dentists had appreciable undisclosed pCoIs in the form of patents or compensation received from pharmaceutical or biotechnology companies. Read More

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http://dx.doi.org/10.1080/23294515.2018.1436095DOI Listing

Children's perspectives on the benefits and burdens of research participation.

AJOB Empir Bioeth 2018 Jan-Mar;9(1):19-28. Epub 2018 Feb 16.

a Department of Psychology , University of Guelph.

Background: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. Read More

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http://dx.doi.org/10.1080/23294515.2018.1430709DOI Listing
October 2018

A paradigm for understanding trust and mistrust in medical research: The Community VOICES study.

AJOB Empir Bioeth 2018 Jan-Mar;9(1):39-47. Epub 2018 Feb 16.

a Department of Emergency Medicine , Icahn School of Medicine at Mount Sinai.

Background: To promote justice in research practice and rectify health disparities, greater diversity in research participation is needed. Lack of trust in medical research is one of the most significant obstacles to research participation. Multiple variables have been identified as factors associated with research participant trust/mistrust. Read More

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http://dx.doi.org/10.1080/23294515.2018.1432718DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6092744PMC
October 2018

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.

AJOB Empir Bioeth 2018 Jan-Mar;9(1):29-38. Epub 2018 Feb 8.

d Oxford Uehiro Centre for Practical Ethics, University of Oxford.

Background: Transcranial direct current stimulation (tDCS) is an experimental brain stimulation technology that may one day be used to enhance the cognitive capacities of children. Discussion about the ethical issues that this would raise has rarely moved beyond expert circles. However, the opinions of the wider public can lead to more democratic policy decisions and broaden academic discussion of this issue. Read More

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http://dx.doi.org/10.1080/23294515.2018.1424268DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6068541PMC
October 2018

Understanding variations in secondary findings reporting practices across U.S. genome sequencing laboratories.

AJOB Empir Bioeth 2018 Jan-Mar;9(1):48-57. Epub 2017 Dec 21.

b Institute for Health and Aging, University of California , San Francisco.

Background: Increasingly used for clinical purposes, genome and exome sequencing can generate clinically relevant information that is not directly related to the reason for testing (incidental or secondary findings). Debates about the ethical implications of secondary findings were sparked by the American College of Medical Genetics (ACMG) 2013 policy statement, which recommended that laboratories report pathogenic alterations in 56 genes. Although wide variation in laboratories' secondary findings policies has been reported, little is known about its causes. Read More

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http://dx.doi.org/10.1080/23294515.2017.1405095DOI Listing
October 2018

Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives.

AJOB Empir Bioeth 2017 Oct-Dec;8(4):266-276

b Center for Wireless and Population Health Systems , Qualcomm Institute, University of California San Diego.

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 participants. To explore experiences with, and perceptions about, technology-enabled research, and identify solutions for promoting responsible conduct of this research we conducted focus groups with human research protection program and IRB affiliates. Read More

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http://dx.doi.org/10.1080/23294515.2017.1403980DOI Listing
July 2018
11 Reads

Epistemic injustice in dementia and autism patient organizations: An empirical analysis.

AJOB Empir Bioeth 2017 Oct-Dec;8(4):221-233. Epub 2017 Dec 5.

a Medical Ethics and History of Medicine, University Medical Center Göttingen.

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). Read More

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http://dx.doi.org/10.1080/23294515.2017.1402833DOI Listing
July 2018
7 Reads

Views of clinical trial participants on the readability and their understanding of informed consent documents.

AJOB Empir Bioeth 2017 Oct-Dec;8(4):277-284. Epub 2017 Nov 30.

b Department of Statistics , University of Pretoria.

Background: One of the ethical imperatives for a valid consent process in clinical medication trials is that the process be guided by and recorded in an informed consent document (ICD). Concerns have been expressed, however, about readability and participant understanding of ICDs, which are often 10-20 pages long. Objective measures of readability and understanding have been used to support these concerns in several articles, but surprisingly the voice of trial participants on ICDs has not been heard in previous studies. Read More

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http://dx.doi.org/10.1080/23294515.2017.1401563DOI Listing

"Will they be good enough parents?": Ethical dilemmas, views, and decisions among assisted reproductive technology (ART) providers.

Authors:
Robert Klitzman

AJOB Empir Bioeth 2017 Oct-Dec;8(4):253-265. Epub 2017 Oct 23.

a Department of Psychiatry and Director , Bioethics Masters & Online Course Programs, Columbia University.

Background: Many adults may make less-than-ideal parents, but important ethical questions arise concerning whether assisted reproductive technology (ART) providers should thus ever refuse treatment to certain patients, and if so, when, and how to decide.

Methods: In-depth interviews of approximately 1 hour each were conducted with 27 ART providers (17 physicians, and 10 other health providers).

Results: Clinicians often struggle with whether to attempt to assess and predict patients' potential future parenting abilities, and if so, how, and how to proceed if doubts arise. Read More

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https://www.tandfonline.com/doi/full/10.1080/23294515.2017.1
Publisher Site
http://dx.doi.org/10.1080/23294515.2017.1394927DOI Listing
July 2018
1 Read

Counseling parents at risk of delivery of an extremely premature infant: Differing strategies.

AJOB Empir Bioeth 2017 Oct-Dec;8(4):243-252. Epub 2017 Oct 19.

d Department of Engineering and Public Policy and Institute for Politics and Strategy , Carnegie Mellon University.

Background: It is not known how neonatologists address the affective and cognitive loads on parents deciding whether to resuscitate infants born extremely preterm. This study explores expert neonatologists' views on these decision-making processes and their own roles in counseling parents.

Methods: Semistructured interviews asked internationally recognized experts to share their perspectives on perinatal consultations. Read More

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http://dx.doi.org/10.1080/23294515.2017.1394399DOI Listing
July 2018
8 Reads

Same behavior, different provider: American medical students' attitudes toward reporting risky behaviors committed by doctors, nurses, and classmates.

AJOB Empir Bioeth 2018 Jan-Mar;9(1):12-18. Epub 2017 Oct 6.

a University of California, Irvine School of Medicine.

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 < . Read More

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http://dx.doi.org/10.1080/23294515.2017.1377780DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6436378PMC
October 2018
1 Read

How should we deal with misattributed paternity? A survey of lay public attitudes.

AJOB Empir Bioeth 2017 Oct-Dec;8(4):234-242. Epub 2017 Sep 29.

a Bruce Lefroy Centre for Genetic Health Research Murdoch Children's Research Institute and Department of Paediatrics , University of Melbourne.

Background: Increasing use of genetic technologies in clinical and research settings increases the potential for misattributed paternity to be identified. Yet existing guidance from the President's Commission for the Study of Ethical Problems in Biomedical and Behavioral Research and the Institute of Medicine (among others) offers contradictory advice. Genetic health professionals are thus likely to vary in their practice when misattributed paternity is identified, and empirical investigation into the disclosure of misattributed paternity is scarce. Read More

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http://dx.doi.org/10.1080/23294515.2017.1378751DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5849225PMC
July 2018
28 Reads

Membership recruitment and training in health care ethics committees: Results from a national pilot survey.

AJOB Empir Bioeth 2017 Jul-Sep;8(3):161-169. Epub 2017 Jun 12.

a Department of Social Medicine , School of Medicine, University of North Carolina at Chapel Hill.

This pilot study reports on a survey regarding recruitment, appointment, and training of members for health care ethics committees (HCECs).

Background: Past studies have examined HCECs, but have focused on the roles of the committees and the broad makeup of membership. Thus, our study fills an important knowledge gap in trends of membership recruitment and appointment processes employed by HCECs to comprise their membership. Read More

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https://www.tandfonline.com/doi/full/10.1080/23294515.2017.1
Publisher Site
http://dx.doi.org/10.1080/23294515.2017.1338315DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5702535PMC
June 2018
1 Read

Is it important to disclose how treatments are selected in clinical research and clinical care?

AJOB Empir Bioeth 2017 Jul-Sep;8(3):170-177. Epub 2017 Apr 3.

b Department of Bioethics , NIH Clinical Center.

Background: Current practice and policies maintain that it is very important to disclose to potential research subjects that their treatment will be selected by randomization. In contrast, it typically is not considered important to disclose to patients how doctors select their treatment. Unfortunately, when the available treatment options are similar to one another, this approach has the potential to inadvertently undermine both clinical research and clinical care. Read More

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http://dx.doi.org/10.1080/23294515.2017.1314392DOI Listing

Physician understanding and application of surrogate decision-making laws in clinical practice.

AJOB Empir Bioeth 2017 Jul-Sep;8(3):198-204. Epub 2016 Sep 9.

d Indiana University School of Medicine.

Background: Although state surrogate laws are the most common way surrogate decision makers are identified, no studies have been conducted to determine physician understanding of these laws or how these laws are utilized during clinical practice. The purpose of this study is to better understand how surrogate decision-making laws function in practice.

Methods: A cross-sectional survey of 412 physicians working in Indiana hospitals was conducted between November 2014 and January 2015 to determine physicians' knowledge of Indiana's surrogate decision-making law and physicians' approaches to hypothetical cases using the law in clinical practice. Read More

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http://dx.doi.org/10.1080/23294515.2016.1234520DOI Listing
June 2018
1 Read

A randomized study of a method for optimizing adolescent assent to biomedical research.

AJOB Empir Bioeth 2017 Jul-Sep;8(3):189-197. Epub 2016 Oct 24.

e Department of Pediatrics , University of New Mexico Health Sciences Center.

Purpose: Voluntary consent/assent with adolescents invited to participate in research raises challenging problems. No studies to date have attempted to manipulate autonomy in relation to assent/consent processes. This study evaluated the effects of an autonomy-enhanced individualized assent/consent procedure embedded within a randomized pediatric asthma clinical trial. Read More

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http://dx.doi.org/10.1080/23294515.2016.1251507DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791895PMC
June 2018
5 Reads

Consent for organ donation after circulatory death at U.S. transplant centers.

AJOB Empir Bioeth 2017 Jul-Sep;8(3):205-210. Epub 2017 Aug 2.

d Department of Pediatrics , Columbia University College of Physicians and Surgeons.

Background: Despite calls for a controlled organ donation after circulatory death (cDCD) consent process that is more rigorous, consistent, and transparent, little is known about the cDCD consent processes utilized by U.S. hospitals. Read More

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http://dx.doi.org/10.1080/23294515.2017.1363319DOI Listing
June 2018
4 Reads

Improving informed consent: Stakeholder views.

AJOB Empir Bioeth 2017 Jul-Sep;8(3):178-188. Epub 2017 Aug 2.

c College of Nursing , University of Illinois at Chicago.

Purpose: Innovation will be required to improve the informed consent process in research. We aimed to obtain input from key stakeholders-research participants and those responsible for obtaining informed consent-to inform potential development of a multimedia informed consent "app."

Methods: This descriptive study used a mixed-methods approach. Read More

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http://dx.doi.org/10.1080/23294515.2017.1362488DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749407PMC
June 2018
3 Reads

Main outcomes of an RCT to pilot test reporting and feedback to foster research integrity climates in the VA.

AJOB Empir Bioeth 2017 Jul-Sep;8(3):211-219. Epub 2017 Aug 7.

g University of Arkansas for Medical Sciences.

Background: Assessing the integrity of research climates and sharing such information with research leaders may support research best practices. We report here results of a pilot trial testing the effectiveness of a reporting and feedback intervention using the Survey of Organizational Research Climate (SOuRCe).

Methods: We randomized 41 Veterans Health Administration (VA) facilities to a phone-based intervention designed to help research leaders understand their survey results (enhanced arm) or to an intervention in which results were simply distributed to research leaders (basic arm). Read More

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http://dx.doi.org/10.1080/23294515.2017.1363318DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5689383PMC
June 2018
5 Reads

The use of an online comment system in clinical ethics consultation.

AJOB Empir Bioeth 2017 Jul-Sep;8(3):153-160. Epub 2017 May 30.

b Center for Bioethics and Social Sciences in Medicine , University of Michigan Medical School.

Background: Although a mechanism for resolving ethical issues in patient care is required for accreditation of American hospitals, there are no formal qualifications for providing clinical ethics consultation (CEC), and there remains great variability in the composition of ethics committees and consult services. Consequently, the quality of CEC also varies depending on the qualifications of those performing CEC services and the format of CEC utilized at an institution. Our institution implemented an online CEC comment system to build upon existing practices to promote consistency and broad consensus in CEC services and enable quality assurance. Read More

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http://dx.doi.org/10.1080/23294515.2017.1335808DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5621479PMC
June 2018
3 Reads

Moral conflict and competing duties in the initiation of a biomedical HIV prevention trial with minor adolescents.

AJOB Empir Bioeth 2017 Jul-Sep;8(3):145-152. Epub 2016 Oct 21.

e ATN Coordinating Center, Department of Epidemiology , University of Alabama Birmingham School of Public Health.

Background: Biomedical HIV prevention research with minors is complicated by the requirement of parental consent, which may disclose sensitive information to parents. We examine the experience of principal investigators (PIs) and study personnel who faced this complex ethical issue in the first biomedical HIV prevention study that allowed minors to self-consent for enrollment.

Methods: We conducted in-depth interviews with PIs and study personnel from 13 medical trial sites in cities across the United States. Read More

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http://dx.doi.org/10.1080/23294515.2016.1251506DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5618718PMC
June 2018
30 Reads

Online public reactions to fMRI communication with patients with disorders of consciousness: Quality of life, end-of-life decision making, and concerns with misdiagnosis.

AJOB Empir Bioeth 2017 Jan-Mar;8(1):40-51. Epub 2016 Aug 19.

b Institut de Recherches Cliniques de Montreal (IRCM) , Neuroethics Research Unit.

Background: Recently, the news media have reported on the discovery of covert awareness and the establishment of limited communication using a functional magnetic resonance imaging (fMRI) neuroimaging technique with several brain-injured patients thought to have been in a vegetative state. This discovery has raised many ethical, legal, and social questions related to quality of life, end-of-life decision making, diagnostic and prognostic accuracy in disorders of consciousness, resource allocation, and other issues. This project inquires into the public responses to these discoveries. Read More

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https://www.tandfonline.com/doi/full/10.1080/23294515.2016.1
Publisher Site
http://dx.doi.org/10.1080/23294515.2016.1226199DOI Listing
May 2018
4 Reads