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AJOB Empirical Bioethics

Elliott G Richards, Patricia K Agatisa, Anne C Davis, Rebecca Flyckt, Hilary Mabel, Tommaso Falcone, Andreas Tzakis, Ruth M Farrell
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. In-depth interviews were conducted in conjunction with FertiQoL, a validated and widely used tool to measure the impact of infertility on the quality of life of infertility patients...
March 11, 2019: AJOB Empirical Bioethics
Clara Berridge, Jodi Halpern, Karen Levy
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...
February 22, 2019: AJOB Empirical Bioethics
Mary Camp, John Sadler
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 distress...
February 22, 2019: AJOB Empirical Bioethics
Sarah C Nelson, Joon-Ho Yu, Jennifer K Wagner, Tanya M Harrell, Charmaine D Royal, Michael J Bamshad
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...
January 4, 2019: AJOB Empirical Bioethics
Tobias Haeusermann, Marta Fadda, Alessandro Blasimme, Bastian Greshake Tzovaras, Effy Vayena
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...
December 31, 2018: AJOB Empirical Bioethics
Reza D Mirza, Melody Ren, Arnav Agarwal, Gordon H Guyatt
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...
December 31, 2018: AJOB Empirical Bioethics
Deborah R Gordon, Carmen Radecki Breitkopf, Marguerite Robinson, Wesley O Petersen, Jason S Egginton, Kari G Chaffee, Gloria M Petersen, Susan M Wolf, Barbara A Koenig
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...
December 31, 2018: AJOB Empirical Bioethics
Inmaculada de Melo-Martín, Lisa R Rubin, Ina N Cholst
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...
November 6, 2018: AJOB Empirical Bioethics
Laura Yenisa Cabrera, Marisa Brandt, Rachel McKenzie, Robyn Bluhm
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...
November 6, 2018: AJOB Empirical Bioethics
Victoria Shepherd, Kerenza Hood, Mark Sheehan, Richard Griffith, Amber Jordan, Fiona Wood
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. This systematic review provides a synthesis of the empirical data reporting the ethical issues surrounding decisions made by research proxies, and the development of a conceptual framework of proxy decision-making for research...
October 15, 2018: AJOB Empirical Bioethics
Charles W Lidz, Ekaterina Pivovarova, Paul Appelbaum, Deborah F Stiles, Alexandra Murray, Robert L Klitzman
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 staff, from 20 IRBs that acted as sIRBs for multisite research, including 6 commercial/independent sIRBs, and 10 university-based academic and 4 federal sIRBs...
October 4, 2018: AJOB Empirical Bioethics
Zubin Master, Kelly Werner, Elise Smith, David B Resnik, Bryn Williams-Jones
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...
September 24, 2018: AJOB Empirical Bioethics
Armand H Matheny Antommaria, Kyle B Brothers, John A Myers, Yana B Feygin, Sharon A Aufox, Murray H Brilliant, Pat Conway, Stephanie M Fullerton, Nanibaa' A Garrison, Carol R Horowitz, Gail P Jarvik, Rongling Li, Evette J Ludman, Catherine A McCarty, Jennifer B McCormick, Nathaniel D Mercaldo, Melanie F Myers, Saskia C Sanderson, Martha J Shrubsole, Jonathan S Schildcrout, Janet L Williams, Maureen E Smith, Ellen Wright Clayton, Ingrid A Holm
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...
September 21, 2018: AJOB Empirical Bioethics
Lisa Campo-Engelstein, Rohia Aziz, Shilpa Darivemula, Jennifer Raffaele, Rajani Bhatia, Wendy M Parker
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...
September 20, 2018: AJOB Empirical Bioethics
Alissa R Stavig, Hyo Jung Tak, John D Yoon, Farr A Curlin
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. We examine whether physicians believe they should pay attention to societal costs or refuse requests for costly interventions with little chance of patient benefit. METHODS: We conducted a secondary analysis of data from a 2010 national survey of 2016 U.S...
August 30, 2018: AJOB Empirical Bioethics
Angela Ballantyne, Andrew Moore
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. The purpose of this study was to assess how New Zealand RECs weigh the potentially competing goals of enabling research and protecting patients' rights...
July 2018: AJOB Empirical Bioethics
Shana D Stites, Justin Clapp, Stefanie Gallagher, Autumn Fiester
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. medical schools include ethics curricula in their undergraduate programs. However, the contents of these curricula vary substantially. Our pilot study aimed to discover, from the students' perspective, how ethics pedagogy prepares medical students for clerkship and what gaps might remain. METHODS: This qualitative study organized focus groups of third- and fourth-year medical students...
July 2018: AJOB Empirical Bioethics
Nana Cecilie Halmsted Kongsholm, Jesper Lassen, Peter Sandøe
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. To evaluate the ethical status of such modified consent strategies it is necessary to assess the extent to which local practices accord with the values underlying informed consent...
May 3, 2018: AJOB Empirical Bioethics
Hazar Haidar, Meredith Vanstone, Anne-Marie Laberge, Gilles Bibeau, Labib Ghulmiyyah, Vardit Ravitsky
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...
April 2018: AJOB Empirical Bioethics
Lisa McManus, Jill A Fisher
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. Because of the economic incentives underlying their motivation to participate, there is concern that healthy volunteers routinely fail to report AEs and thereby jeopardize the validity of the trial results...
April 2018: AJOB Empirical Bioethics
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