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Thought leader perspectives on benefits and harms in precision medicine research.

ABSTRACT: Precision medicine research is underway to identify targeted approaches to improving health and preventing disease. However, such endeavors raise significant privacy and confidentiality concerns. The objective of this study was to elucidate the potential benefits and harms associated with precision medicine research through in-depth interviews with a diverse group of thought leaders, including primarily U.S.-based experts and scholars in the areas of ethics, genome research, health law, historically-disadvantaged populations, informatics, and participant-centric perspectives, as well as government officials and human subjects protections leaders. The results suggest the prospect of an array of individual and societal benefits, as well as physical, dignitary, group, economic, psychological, and legal harms. Relative to the way risks and harms are commonly described in consent forms for precision medicine research, the thought leaders we interviewed arguably emphasized a somewhat different set of issues. The return of individual research results, harm to socially-identifiable groups, the value-dependent nature of many benefits and harms, and the risks to the research enterprise itself emerged as important cross-cutting themes. Our findings highlight specific challenges that warrant concentrated care during the design, conduct, dissemination, and translation of precision medicine research and in the development of consent materials and processes.

SUBMITTER: Beskow LM

PROVIDER: S-EPMC6258115 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Thought leader perspectives on benefits and harms in precision medicine research.

Beskow Laura M LM Hammack Catherine M CM Brelsford Kathleen M KM

PloS one 20181126 11

Precision medicine research is underway to identify targeted approaches to improving health and preventing disease. However, such endeavors raise significant privacy and confidentiality concerns. The objective of this study was to elucidate the potential benefits and harms associated with precision medicine research through in-depth interviews with a diverse group of thought leaders, including primarily U.S.-based experts and scholars in the areas of ethics, genome research, health law, historic ...[more]

PMID: 30475858

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Project description:BackgroundHospitals routinely collect large amounts of administrative data such as length of stay, 28-day readmissions, and hospital-acquired complications; yet, these data are underused for continuing professional development (CPD). First, these clinical indicators are rarely reviewed outside of existing quality and safety reporting. Second, many medical specialists view their CPD requirements as time-consuming, having minimal impact on practice change and improving patient outcomes. There is an opportunity to build new user interfaces based on these data, designed to support individual and group reflection. Data-informed reflective practice has the potential to generate new insights about performance, bridging the gap between CPD and clinical practice.ObjectiveThis study aims to understand why routinely collected administrative data have not yet become widely used to support reflective practice and lifelong learning.MethodsWe conducted semistructured interviews (N=19) with thought leaders from a range of backgrounds, including clinicians, surgeons, chief medical officers, information and communications technology professionals, informaticians, researchers, and leaders from related industries. Interviews were thematically analyzed by 2 independent coders.ResultsRespondents identified visibility of outcomes, peer comparison, group reflective discussions, and practice change as potential benefits. The key barriers included legacy technology, distrust with data quality, privacy, data misinterpretation, and team culture. Respondents suggested recruiting local champions for co-design, presenting data for understanding rather than information, coaching by specialty group leaders, and timely reflection linked to CPD as enablers to successful implementation.ConclusionsOverall, there was consensus among thought leaders, bringing together insights from diverse backgrounds and medical jurisdictions. We found that clinicians are interested in repurposing administrative data for professional development despite concerns with underlying data quality, privacy, legacy technology, and visual presentation. They prefer group reflection led by supportive specialty group leaders, rather than individual reflection. Our findings provide novel insights into the specific benefits, barriers, and benefits of potential reflective practice interfaces based on these data sets. They can inform the design of new models of in-hospital reflection linked to the annual CPD planning-recording-reflection cycle.

Dataset Information

Thought leader perspectives on benefits and harms in precision medicine research.

Publications

Thought leader perspectives on benefits and harms in precision medicine research.

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