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AJOB Empirical Bioethics

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https://www.readbyqxmd.com/read/28960139/how-should-we-deal-with-misattributed-paternity-a-survey-of-lay-public-attitudes
#1
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
#2
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
#3
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
#4
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
#5
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
#6
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
#7
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
#8
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
#9
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
#10
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
#11
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
#12
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
#13
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
#14
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
https://www.readbyqxmd.com/read/28949843/does-experience-matter-implications-for-community-consultation-for-research-in-emergency-settings
#15
Victoria M Scicluna, Mohammed K Ali, Rebecca D Pentz, David W Wright, Neal W Dickert
BACKGROUND: Community consultation (CC) is required for research in emergency settings using an exception from informed consent (EFIC) in the United States, but uncertainty persists regarding best CC practices. There is ongoing debate about whom to include in CC, specifically, whether to prioritize geographically defined communities or individuals with connections to the condition. Understanding the impact of personal disease experience on views of EFIC research is important for designing CC and interpreting its results...
April 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949842/perspectives-of-irb-chairs-on-the-informed-consent-process
#16
Eugene I Kane, Joseph J Gallo
BACKGROUND: Questions have been raised by researchers and ethics committees about whether human research subjects comprehend study participation when signing a research consent form. METHODS: To determine existing beliefs about the informed consent review process, impediments to shorter consent, and augmented/alternative consent methods, a survey of institutional review board (IRB) chairpersons was conducted. RESULTS: IRB chairs expressed concern with (but do not often assess) the length, complexity, and reading level of the consent form or participant comprehension...
April 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949841/qualitative-study-of-participants-perceptions-and-preferences-regarding-research-dissemination
#17
Rachel S Purvis, Traci H Abraham, Christopher R Long, M Kathryn Stewart, T Scott Warmack, Pearl Anna McElfish
BACKGROUND: The study identifies the experiences, preferences, and perceptions of research participants regarding dissemination of research findings at the participant level and community level. METHODS: The qualitative study utilized focus-group methodology to explore research participants' experiences and preferences for the dissemination of research findings. Five focus groups were held with 53 participants who were recruited through existing community advisory boards in Arkansas...
April 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949840/adolescent-oncofertility-discussions-recommendations-from-a-systematic-literature-review
#18
Dorit Barlevy, Bernice S Elger, Tenzin Wangmo, Vardit Ravitsky
BACKGROUND: Increasing cancer incidence and survivorship rates have made late-term effects, such as effects on fertility, a salient issue for adolescent cancer patients. While various barriers make it difficult for health care professionals to discuss oncofertility with adolescents and their parents, there are numerous reasons to hold such discussions, based on professional obligations and the ethical principles of respect for autonomy and beneficence. This systematic literature review presents and critically examines recommendations for adolescent oncofertility discussions...
April 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949839/primary-care-physicians-views-about-gatekeeping-in-clinical-research-recruitment-a-qualitative-study
#19
Marilys Guillemin, Rosalind McDougall, Dominique Martin, Nina Hallowell, Alison Brookes, Lynn Gillam
BACKGROUND: Clinical research is increasingly being undertaken in primary care settings. This development offers both benefits and challenges. The ethical challenges of occupying the roles of both clinician and researcher may be accentuated in primary care settings, where relationships are longer lasting and medical conditions are less acute. This article examines primary care physicians' experiences of undertaking research, particularly their decision making about recruiting patients in the context of their own dual roles...
April 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28949838/the-interactions-of-canadian-ethics-consultants-with-health-care-managers-and-governing-boards-during-times-of-crisis
#20
Chris Kaposy, Victor Maddalena, Fern Brunger, Daryl Pullman, Richard Singleton
BACKGROUND: Health care organizations can be very complex, and are often the setting for crisis situations. In recent years, Canadian health care organizations have faced large-scale systemic medical errors, a nation-wide generic injectable drug shortage, iatrogenic infectious disease outbreaks, and myriad other crises. These situations often have an ethical component that ethics consultants may be able to address. Organizational leaders such as health care managers and governing boards have responsibilities to oversee and direct the response to crisis situations...
April 2017: AJOB Empirical Bioethics
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