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AJOB Empirical Bioethics

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https://www.readbyqxmd.com/read/29131714/understanding-variations-in-secondary-findings-reporting-practices-across-u-s-genome-sequencing-laboratories
#1
Sara Ackerman, Barbara 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)'s 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...
November 13, 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29125425/ethical-and-regulatory-challenges-of-research-using-pervasive-sensing-and-other-emerging-technologies-irb-perspectives
#2
Camille Nebeker, John Harlow, Rebeca Giacinto-Espinoza, 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...
November 10, 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29116905/epistemic-injustice-in-dementia-and-autism-patient-organizations-an-empirical-analysis
#3
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...
November 8, 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
#4
Rita Sommers, Cornelius Werendly 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...
November 7, 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
#5
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 23, 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/29048264/counseling-parents-at-risk-of-delivery-of-an-extremely-premature-infant-differing-strategies
#6
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: Semi-structured interviews asked internationally recognized experts to share their perspectives on perinatal consultations. Their responses were subjected to thematic analysis...
October 19, 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28960139/how-should-we-deal-with-misattributed-paternity-a-survey-of-lay-public-attitudes
#7
Georgia Lowe, Jonathan Pugh, Guy Kahane, Louise Corben, Sharon Lewis, Martin Delatycki, Julian Savulescu
Backround: 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 (amongst 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...
September 29, 2017: 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
#8
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 < ...
September 8, 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949901/membership-recruitment-and-training-in-health-care-ethics-committees-results-from-a-national-pilot-survey
#9
Anya E R Prince, R Jean Cadigan, Warren Whipple, Arlene M Davis
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. METHODS: We posted our survey on several bioethics listservs between June and August 2015...
July 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949900/is-it-important-to-disclose-how-treatments-are-selected-in-clinical-research-and-clinical-care
#10
Rahul K Nayak, David Wendler
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. Hence, it is important to assess whether, in the context of similar treatment options, individuals support current practice of using very different disclosure practices in research and care...
July 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949899/physician-understanding-and-application-of-surrogate-decision-making-laws-in-clinical-practice
#11
Amber Rose Comer, Margaret Gaffney, Cynthia L Stone, Alexia Torke
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...
July 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949898/a-randomized-study-of-a-method-for-optimizing-adolescent-assent-to-biomedical-research
#12
Robert D Annett, Janet L Brody, David G Scherer, Charles W Turner, Jeanne Dalen, Hengameh Raissy
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. METHODS: Families were randomly assigned to remain together or separated during a consent/assent process; the latter we characterize as an autonomy-enhanced assent/consent procedure...
July 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949897/consent-for-organ-donation-after-circulatory-death-at-u-s-transplant-centers
#13
George E Hardart, Matthew K Labriola, Kenneth Prager, Marilyn C Morris
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. The objective of this research was to describe the cDCD consent policies of U.S. transplant hospitals, including consent for antemortem interventions (AMI), in order to inform the development of a more rigorous and sound consent process. METHODS: Cross-sectional study data of cDCD policies of U...
July 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949896/improving-informed-consent-stakeholder-views
#14
Emily E Anderson, Susan B Newman, Alicia K Matthews
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. Five 90-minute focus groups were conducted with volunteer samples of former research participants and researchers/research staff responsible for obtaining informed consent...
July 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949895/main-outcomes-of-an-rct-to-pilot-test-reporting-and-feedback-to-foster-research-integrity-climates-in-the-va
#15
Brian C Martinson, David C Mohr, Martin P Charns, David Nelson, Emily Hagel-Campbell, Ann Bangerter, Hanna E Bloomfield, Richard Owen, Carol R Thrush
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)...
July 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949894/the-use-of-an-online-comment-system-in-clinical-ethics-consultation
#16
Katrina Hauschildt, Trisha K Paul, Raymond De Vries, Lauren B Smith, Christian J Vercler, Andrew G Shuman
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...
July 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949893/moral-conflict-and-competing-duties-in-the-initiation-of-a-biomedical-hiv-prevention-trial-with-minor-adolescents
#17
Amelia S Knopf, Amy Lewis Gilbert, Gregory D Zimet, Bill G Kapogiannis, Sybil G Hosek, J Dennis Fortenberry, Mary A Ott
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...
July 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949846/growing-an-ethics-consultation-service-a-longitudinal-study-examining-two-decades-of-practice
#18
Christine Gorka, Jana M Craig, Bethany J Spielman
BACKGROUND: Little is known about what factors may contribute to the growth of a consultation service or how a practice may change or evolve across time. METHODS: This study examines data collected from a busy ethics consultation service over a period of more than two decades. RESULTS: We report a number of longitudinal findings that represent significant growth in the volume of ethics consultation requests from 19 in 1990 to 551 in 2013, as well as important changes in the patient population for which ethics help is requested...
April 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949845/healthy-individuals-perspectives-on-clinical-research-protocols-and-influences-on-enrollment-decisions
#19
Laura Weiss Roberts, Jane Paik Kim
BACKGROUND: Understanding the perspectives of healthy individuals is important ethically and for the advancement of science. We assessed perceptions of risk associated with research procedures, comparing views of healthy individuals with and without experience in clinical research, and the respondents' reported willingness to volunteer. METHODS: Semistructured interviews and written surveys were conducted. Study participants were healthy individuals, half of whom were currently enrolled in clinical research and half of whom had no prior experience in clinical research...
April 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949844/when-bins-blur-patient-perspectives-on-categories-of-results-from-clinical-whole-genome-sequencing
#20
Leila Jamal, Jill O Robinson, Kurt D Christensen, Jennifer Blumenthal-Barby, Melody J Slashinski, Denise Lautenbach Perry, Jason L Vassy, Julia Wycliff, Robert C Green, Amy L McGuire
BACKGROUND: Clinical genome and exome sequencing (CGES) is being used in an expanding range of clinical settings. Most approaches to offering patients choices about learning CGES results classify results according to expert definitions of clinical actionability. Little is known about how patients conceptualize different categories of CGES results. METHODS: The MedSeq Project is a randomized controlled trial studying the use of whole-genome sequencing (WGS) in primary care and cardiology...
April 2017: AJOB Empirical Bioethics
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