As the demand to include children in research increases, researchers are discovering that few methods exist that are specifically designed with children in mind. In this article, the author introduces the draw-and-tell conversation as a child-centered and child-directed approach to data collection and illustrates its use in a qualitative study of children's fear experiences. Twenty-two children, ages 7 and 8 years, participated. Sequential mixed qualitative analyses suggest that children's draw-and-tell conversations provide new insight into how children describe and experience fear and highlight the unique nature of information accessed when using this approach.
The potential for genomic incidental findings is increasing with the use of genome-based testing. At the same time approaches to clinical decision making are shifting to shared decision-making models involving both the healthcare community and the public. The public’s voice has been nearly absent in discussions on managing incidental findings.
We conducted 9 focus groups and 9 interviews (N=63) with a broad cross-section of lay public groups to elucidate public viewpoints on incidental findings that could occur as a result of genome-based testing in clinical and research situations. Data were analyzed using qualitative content analysis.
Participants wanted incidental findings disclosed to them whether or not these were clinical or research findings. Participants used different terms to define and describe incidental findings; they wanted to know that incidental findings are possible and be given a choice to learn about them. Personal utility was an important reason for disclosure, and participants believed that managing information is a shared responsibility between professionals and themselves.
Broad public input is needed in order to understand and incorporate the public’s perspective on management of incidental findings as disclosure guidelines and policies are developed in clinical and research settings.
Evidence documenting management of incidental findings (IFs) from clinical genomic testing is limited. The aim of this study was to examine genetics specialists’ perspectives regarding current and preferred disclosure of clinical genomic IFs.
50 genetics specialists, including medical geneticists, laboratory professionals, genetic counselors, and nurses participated in structured telephone interviews. Data were analyzed using qualitative content analysis and descriptive statistics.
Most specialists had encountered IFs, but definitions of IFs varied. They discussed challenges with informing patients about the prospect of IFs and disclosing IFs to patients. Causing psychological harm to patients was a concern. Participants were divided on whether IFs needed to be clinically significant and/or actionable in order to be disclosed to patients. Creating formal disclosure guidelines was considered useful, but only if they were flexible. Additional counseling, more interdisciplinary communication, maintaining contact with patients, and a centralized database to interpret IFs were also proposed.
Genetics specialists offer insights into the challenges of defining IFs, knowing when and how to disclose them, and the potential need for flexible disclosure guidelines.
Further discussion between practicing genetics specialists is needed to develop consensus on the development of best-practice guidelines for IF management.
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