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Target Article

Ethics committee consultation due to conflict over life-sustaining treatment: A sociodemographic investigation
Andrew M. Courtwright, Frederic Romain, Ellen M. Robinson & Eric L. Krakauer

Background: The bioethics literature contains speculation but little data about sociodemographic differences between patients for whom ethics committees (EC) are consulted for conflict about life-sustaining treatment (LST) and the broader hospital population that these committees serve. To provide an empirical context for this discussion, we examined differences in five sociodemographic factors be...

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Values, quality, and evaluation in ethics consultation
Lucia D. Wocial, Elizabeth Molnar & Mary A. Ott

Background: The American Society for Bioethics and Humanities has recommended regular evaluation of the quality of health care ethics consultation. This article discusses the impact of ethics consultation on clinicians’ perceptions of a patient’s plan of care and on the personal values of clinicians who participated in an ethics consultation. Methods: Following institutional review boa...

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Perceived low-quality communication is not associated with greater frequency of requests for ethics consultation: Null findings from an empirical study
Rebecca L. Volpe, Jacob Benrud, Elisa J. Gordon & Michael J. Green

Background: Prior research has explored reasons why health care providers may or may not choose to seek an ethics consultation. Although low-quality communication is evident in many ethics consultations, it is unknown whether poor communication in clinical settings is related to health care providers’ requests for ethics involvement. Objective: To assess the relationship between self-reporte...

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Organizational values in the provision of access to care for the uninsured
Krista Lyn Harrison & Holly A. Taylor

Background: For the last 20 years, health provider organizations have made efforts to align mission, values, and everyday practices to ensure high-quality, high-value, and ethical care. However, little attention has been paid to the organizational values and practices of community-based programs that organize and facilitate access to care for uninsured populations. This study aimed to identify an...

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Do patients want their families or their doctors to make treatment decisions in the event of incapacity, and why?
David Wendler, Robert Wesley, Mark Pavlick & Annette Rid

Background: Current practice relies on patient-designated and next-of-kin surrogates, in consultation with clinicians, to make treatment decisions for patients who lose the ability to make their own decisions. Yet there is a paucity of data on whether this approach is consistent with patients’ preferences regarding who they want to make treatment decisions for them in the event of decisional...

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A pilot study of universities' willingness to solicit whistleblowers for participation in a study
Melissa J. Byrn, Barbara K. Redman & Jon F. Merz

Background: It has been more than two decades since the only interview study of whistleblowers in academic research. There remains a need to appreciate whistleblower experience, role in scientific integrity, and whether policies provide adequate protection. Methods: We contacted the institutional official for research, the institutional review board (IRB) director, and the Institutional Animal Car...

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Prioritizing initiatives for institutional review board (IRB) quality improvement
Daniel E. Hall, Ulrike Feske, Barbara H. Hanusa, Bruce S. Ling, Roslyn A. Stone, Shasha Gao, Galen E. Switzer, Aram Dobalian, Michael J. Fine & Robert M. Arnold

Background: Institutional review boards (IRBs) have been criticized for inconsistency, delay, and bias, suggesting an opportunity for quality improvement. To aid such quality improvement, this study aimed at determining IRB members’ and investigators’ priorities regarding IRB review at 10 Veterans Affairs (VA) IRBs. Methods: Six hundred and eighty anonymous Internet surveys were sent to 252 IR...

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Adolescent engagement during assent for exome sequencing
Allison Werner-Lin, Ashley Tomlinson, Victoria Miller & Barbara A. Bernhardt

Background: Research focused on describing the content of informed consent interactions has shed little light on how to best to encourage, support, and nurture adolescent participation in genomic sequencing. Research addressing adolescents’ comprehension and agency is needed because sequencing may have significant implications for an adolescent’s own future health status, as well as fo...

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