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Target Article

Qualitative study of participants' perceptions and preferences regarding research dissemination
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 w...

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Does experience matter? Implications for community consultation for research in emergency settings
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 t...

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When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing
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 contro...

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Healthy individuals' perspectives on clinical research protocols and influences on enrollment decisions
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 ...

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Primary care physicians' views about gatekeeping in clinical research recruitment: A qualitative study
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’ ex...

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Adolescent oncofertility discussions: Recommendations from a systematic literature review
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 eth...

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Growing an ethics consultation service: A longitudinal study examining two decades of practice
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 consultatio...

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The interactions of Canadian ethics consultants with health care managers and governing boards during times of crisis
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 b...

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Perspectives of IRB chairs on the informed consent process
Eugene I. Kane III & 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 wa...

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