Dataset Information

Genomic tools for health: Secondary findings as findings to be shared.

ABSTRACT:

Purpose

Whether and how to disclose secondary finding (SF) information to children is ethically debated. Some argue that genetic testing of minors should be limited to preserve the child's future autonomy. Others suggest that disclosure of SFs can occur if it is in the best interests of the child. However, the ways that parents conceptualize and weigh their child's future autonomy against the interests of their child and other family members are unknown.

Methods

To explore how parents understand SF disclosure in the context of their child and other family members' lives, we conducted semistructured interviews with 30 families (40 parents in total). All parents had children who were enrolled in a genetic sequencing protocol that returned results by default.

Results

We found that parents did not routinely conceptualize SFs as distinctive health information. Rather parents saw this information as part of their child's overall health. To make decisions about disclosure, parents weighed their child's ability to understand the SF information and their other family member's need to know.

Conclusion

Because most families desired SF information, we argue that disclosure of SF be reconceptualized to reflect the lived experiences of those who may receive this information.

SUBMITTER: Miner SA

PROVIDER: S-EPMC9643624 | biostudies-literature | 2022 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Genomic tools for health: Secondary findings as findings to be shared.

Miner Skye A SA Similuk Morgan M Jamal Leila L Sapp Julie J Berkman Benjamin E BE

Genetics in medicine : official journal of the American College of Medical Genetics 20220819 11

<h4>Purpose</h4>Whether and how to disclose secondary finding (SF) information to children is ethically debated. Some argue that genetic testing of minors should be limited to preserve the child's future autonomy. Others suggest that disclosure of SFs can occur if it is in the best interests of the child. However, the ways that parents conceptualize and weigh their child's future autonomy against the interests of their child and other family members are unknown.<h4>Methods</h4>To explore how par ...[more]

PMID: 35980380

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Project description:BackgroundPatient-centered care promotes the involvement of patients in decision-making related to their health care. The adoption and implementation of shared decision-making (SDM) into routine care are constrained by several obstacles, including technical and time constraints, clinician and patient attitudes and perceptions, and processes that exist outside the standardized clinical workflow.ObjectiveWe aimed to understand the integration and implementation characteristics of reported SDM interventions integrated into an electronic health record (EHR) system.MethodsWe conducted a scoping review using the methodological framework by Arksey and O'Malley with guidance from the Joanna Briggs Institute. Eligibility criteria included original research and reviews focusing on SDM situations in a real-world clinical setting and EHR integration of SDM tools and processes. We excluded retrospective studies, conference abstracts, simulation studies, user design studies, opinion pieces, and editorials. To identify eligible studies, we searched the following databases on January 11, 2021: MEDLINE, Embase, CINAHL Complete, Cochrane Library including CENTRAL, PsycINFO, Scopus, and Web of Science Core Collection. We systematically categorized descriptive data and key findings in a tabular format using predetermined data charting forms. Results were summarized using tables and associated narratives related to the review questions.ResultsOf the 2153 studies, 18 (0.84%) were included in the final review. There was a high degree of variation across studies, including SDM definitions, standardized measures, technical integration, and implementation strategies. SDM tools that targeted established health care processes promoted their use. Integrating SDM templates and tools into an EHR appeared to improve the targeted outcomes of most (17/18, 94%) studies. Most SDM interventions were designed for clinicians. Patient-specific goals and values were included in 56% (10/18) of studies. The 2 most common study outcome measures were SDM-related measures and SDM tool use.ConclusionsUnderstanding how to integrate SDM tools directly into a clinician's workflow within the EHR is a logical approach to promoting SDM into routine clinical practice. This review contributes to the literature by illuminating features of SDM tools that have been integrated into an EHR system. Standardization of SDM tools and processes, including the use of patient decision aids, is needed for consistency across SDM studies. The implementation approaches for SDM applications showed varying levels of planning and effort to promote SDM intervention awareness. Targeting accepted and established clinical processes may enhance the adoption and use of SDM tools. Future studies designed as randomized controlled trials are needed to expand the quality of the evidence base. This includes the study of integration methods into EHR systems as well as implementation methods and strategies deployed to operationalize the uptake of the SDM-integrated tools. Emphasizing patients' goals and values is another key area for future studies.

Dataset Information

Genomic tools for health: Secondary findings as findings to be shared.

Purpose

Methods

Results

Conclusion

Publications

Genomic tools for health: Secondary findings as findings to be shared.

Similar Datasets

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