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'Just tell me what’s going on': The views of parents of children with genetic conditions regarding the research use of their child’s electronic health record
- Source :
- J Am Med Inform Assoc
- Publication Year :
- 2020
- Publisher :
- Oxford University Press (OUP), 2020.
-
Abstract
- Objective The purpose of this study was to understand the ethical, legal, and social issues described by parents of children with known or suspected genetic conditions that cause intellectual and developmental disabilities regarding research use of their child’s electronic health record (EHR). Materials and Methods We conducted 4 focus groups with parents of children with a known (n = 12) or suspected (n = 11) genetic condition, as well as 2 comparison groups with parents who had a child with no known genetic condition (n = 15). Focus group transcripts were coded and analyzed using directed content analysis. Results After weighing the risks and benefits, parents of children with known or suspected genetic conditions were willing to share their child’s EHR for research studies under certain conditions. Preferences were for studies conducted by universities or nonprofits that might benefit their child or others with the same condition. Parents also valued return of research results. Discussion Trust, transparency, altruism, and concerns about privacy emerged as factors that affect parents’ willingness to allow research use of their child’s EHR. Conclusion Researchers should consider how to build trust with parents by increasing transparency of the research process and explaining specifically how they will ensure the confidentiality of EHR data.
- Subjects :
- Male
Parents
Autism Spectrum Disorder
Genetics, Medical
media_common.quotation_subject
Health Informatics
Trust
Research and Applications
Social issues
Affect (psychology)
Altruism
Ethics, Research
Developmental psychology
Electronic Health Records
Humans
Confidentiality
Bioethical Issues
Child
health care economics and organizations
media_common
Information Dissemination
Bioethics
Focus Groups
Transparency (behavior)
Focus group
Content analysis
Fragile X Syndrome
Female
Psychology
Attitude to Health
Subjects
Details
- ISSN :
- 1527974X
- Volume :
- 27
- Database :
- OpenAIRE
- Journal :
- Journal of the American Medical Informatics Association
- Accession number :
- edsair.doi.dedup.....fe63615412693edf77c8c821cb9b542e