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Dynamic-informed consent: A potential solution for ethical dilemmas in population sequencing initiatives
Fida K Dankar1, Marton Gergely1, Bradley Malin2,3,4
1College of Information Technology, UAEU, Al-Ain, United Arab Emirates.
Computational and Structural Biotechnology Journal
|April 30, 2020
Summary
Informed consent in population genomics is inconsistently applied. Dynamic consent models aim for continuous participant engagement, but their effectiveness in ensuring truly informed choices requires further analysis.
Area of Science:
- Genomics
- Bioethics
- Informed Consent
Background:
- Population-level genome sequencing initiatives often claim adherence to informed consent principles.
- However, the specific requirements for informed consent in this context are not well-defined.
- Current implementations vary significantly, including broad, blanket, and tiered consent models.
Purpose of the Study:
- To investigate the essential requirements for informed consent in population genomics.
- To review existing dynamic consent models and their implementations.
- To assess the capacity of dynamic consent to ensure participants make autonomous and informed decisions.
Main Methods:
- Analysis of informed consent requirements within population genomics.
- Review of current dynamic consent platforms and their operational frameworks.
- Evaluation of dynamic consent's effectiveness in facilitating informed participant choice.
Main Results:
- Significant variability exists in the definition and application of informed consent across population genomics projects.
- Dynamic consent utilizes personalized communication platforms for continuous participant-researcher interaction.
- The study assesses whether current dynamic consent models adequately meet the criteria for "informed" consent.
Conclusions:
- Population genomics requires clearly defined informed consent standards.
- Dynamic consent offers a promising avenue for continuous engagement and enhanced participant autonomy.
- Further evaluation is needed to confirm dynamic consent's ability to fully support informed decision-making in genomics research.
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