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AJOB Empirical Bioethics

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https://www.readbyqxmd.com/read/29727598/moving-beyond-the-theoretical-medical-students-desire-for-practical-role-specific-ethics-training
#1
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 content 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...
May 4, 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29722609/-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
#2
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
https://www.readbyqxmd.com/read/29847254/cross-cultural-perspectives-on-decision-making-regarding-noninvasive-prenatal-testing-a-comparative-study-of-lebanon-and-quebec
#3
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
https://www.readbyqxmd.com/read/29693508/to-report-or-not-to-report-exploring-healthy-volunteers-rationales-for-disclosing-adverse-events-in-phase-i-drug-trials
#4
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
https://www.readbyqxmd.com/read/29630457/how-acceptable-is-paternalism-a-survey-based-study-of-clinician-and-nonclinician-opinions-on-paternalistic-decision-making
#5
Kunal Bailoor, Thomas Valley, Chithra Perumalswami, Andrew G Shuman, Raymond DeVries, Darin B Zahuranec
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. Clinicians (N = 169) were more likely than nonclinicians (N = 649) to find the doctor withholding surgery acceptable (30...
April 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29611768/patient-perspectives-on-compensation-for-biospecimen-donation
#6
Samuel C Allen, Minisha Lohani, Kristopher A Hendershot, Travis R Deal, Taylor White, Margie D Dixon, Rebecca D Pentz
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...
April 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29513089/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
#7
Erin Rothwell, Jeffrey R Botkin, Sydney Cheek-O'Donnell, Bob Wong, Gretchen A Case, Erin Johnson, Trent Matheson, Alena Wilson, Nicole R Robinson, Jared Rawlings, Brooke Horejsi, Ana Maria Lopez, Carrie L Byington
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...
March 7, 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29400625/undisclosed-conflicts-of-interest-among-biomedical-textbook-authors
#8
Brian J Piper, Drew A Lambert, Ryan C Keefe, Phoebe U Smukler, Nicolas A Selemon, Zachary R Duperry
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...
February 5, 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29369013/children-s-perspectives-of-the-benefits-and-burdens-of-research-participation
#9
Claudia Barned, Jennifer Dobson, Alain Stintzi, David Mack, Kieran C O'Doherty
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 healthcare systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients...
January 25, 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29368998/a-paradigm-for-understanding-trust-and-mistrust-in-medical-research-the-community-voices-study
#10
M Smirnoff, I Wilets, D F Ragin, R Adams, J Holohan, R Rhodes, G Winkel, E M Ricci, C Clesca, L D Richardson
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. A conceptual model that provides meaningful insight into the interplay of factors impacting trust may promote more ethical research practice and provide an enhanced, actionable understanding of participant mistrust...
January 25, 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29338674/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
#11
Katy Wagner, Hannah Maslen, Justin Oakley, Julian Savulescu
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. METHODS: We performed a quantitative survey of members of the U...
January 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29267141/-god-is-the-giver-and-taker-of-life-muslim-beliefs-and-attitudes-regarding-assisted-suicide-and-euthanasia
#12
Chaïma Ahaddour, Stef Van den Branden, Bert Broeckaert
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 whether a shift is observable in the views and attitudes regarding active termination of life between first- and second-generation Muslims...
January 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29131714/understanding-variations-in-secondary-findings-reporting-practices-across-u-s-genome-sequencing-laboratories
#13
Sara L Ackerman, Barbara A Koenig
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...
January 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28985136/same-behavior-different-provider-american-medical-students-attitudes-toward-reporting-risky-behaviors-committed-by-doctors-nurses-and-classmates
#14
Sahil Aggarwal, Aaron Kheriaty
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 < ...
January 2018: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29125425/ethical-and-regulatory-challenges-of-research-using-pervasive-sensing-and-other-emerging-technologies-irb-perspectives
#15
Camille Nebeker, John Harlow, Rebeca Espinoza Giacinto, Rubi Orozco-Linares, Cinnamon S Bloss, Nadir Weibel
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...
October 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29116905/epistemic-injustice-in-dementia-and-autism-patient-organizations-an-empirical-analysis
#16
Karin Jongsma, Elisabeth Spaeth, Silke Schicktanz
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 should be included on an organizational level, which voices are accepted and who should represent these voices on the political level...
October 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29111872/views-of-clinical-trial-participants-on-the-readability-and-their-understanding-of-informed-consent-documents
#17
Rita Somers, Cornelius Van Staden, Francois Steffens
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...
October 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29058532/-will-they-be-good-enough-parents-ethical-dilemmas-views-and-decisions-among-assisted-reproductive-technology-art-providers
#18
Robert Klitzman
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...
October 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29048264/counseling-parents-at-risk-of-delivery-of-an-extremely-premature-infant-differing-strategies
#19
Marlyse F Haward, Annie Janvier, John M Lorenz, Baruch Fischhoff
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. Their responses were subjected to thematic analysis...
October 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28960139/how-should-we-deal-with-misattributed-paternity-a-survey-of-lay-public-attitudes
#20
Georgia Lowe, Jonathan Pugh, Guy Kahane, Louise Corben, Sharon Lewis, Martin Delatycki, Julian Savulescu
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...
October 2017: AJOB Empirical Bioethics
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