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Desiderata for digital consent in genomic research
Carlos Luis Parra-Calderón1, Jane Kaye2, Alberto Moreno-Conde3
1Group of Research and Innovation in Biomedical Informatics, Biomedical Engineering and Health Economy, Institute of Biomedicine of Seville, IBiS / Virgen del Rocío University Hospital / CSIC / University of Seville, 41013, Seville, Spain. clparrac@gmail.com.
Journal of Community Genetics
|January 25, 2018
Summary
Digital Consent (DC) systems offer a solution for genomic research ethical challenges. This study identifies ten key features for realizing DC in genomic research, addressing privacy and incidental findings.
Area of Science:
- Genomic Medicine
- Bioethics
- Health Informatics
Background:
- Informed consent for genomic research faces ethical and legal challenges.
- Genomic data analysis presents issues like incidental findings.
- Digital Consent (DC) systems offer potential solutions for patient engagement and data control.
Purpose of the Study:
- To characterize a Digital Consent (DC) system for genomic research.
- To address ethical-legal issues in genomic research consent.
- To identify key features for effective DC implementation.
Main Methods:
- Review of ethical-legal issues in genomic research.
- Analysis of security and privacy recommendations for precision medicine.
- Examination of Health Information Standardization Organizations (HL7, IHE) interoperability standards.
- Exploration of recent research in Genomic Medicine ethics.
Main Results:
- A Digital Consent (DC) system framework was characterized.
- Security, privacy, and interoperability considerations were addressed.
- Ten key features for DC realization in genomic research were identified.
Conclusions:
- Digital Consent (DC) systems are crucial for navigating ethical complexities in genomic research.
- Further exploration of identified features is necessary for successful DC implementation.
- DC systems can enhance patient control and engagement in genomic research.
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