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Patient priorities for fulfilling the principle of respect in research: Findings from a modified Delphi study
Participants in this study by Kraft, Duenas, and Shah said informed consent and interpersonal interactions were most important to their experience of respect in the research context.
Genomics research with undiagnosed children: Ethical challenges at the boundaries of research and clinical care
Halley and colleagues find that parents of undiagnosed children seeking enrollment in genomic diagnosis research are at risk of “diagnostic misconception”. Although individual diagnosis is a stated goal, this expected benefit is not always realized and others may be impeded by the practical limitations of research, including limited resources for regular communication and limitations on providing medical advice to participants.
Media framings of the role of genomics in "addiction" in the United States from 2015 to 2019: Individualized risk, biomedical expertise, and the limits of destigmatization
Hendy found that while discussions of the role of genomics in addiction acknowledge social and environmental factors, they are still used to support ideas about the self management of individual risk.