Obtaining informed consent from a participant or patient undergirds research and healthcare practices. Yet patient and participant consent forms are often long documents that are difficult to understand, leading to confusion, suspicion, or even serious ethical harm. To support researchers and clinicians in drafting ethically appropriate, clear, and digestible consent forms, the GA4GH Regulatory & Ethics Work Stream (REWS) has developed the Consent Toolkit, with sample consent clauses for clinical genomics, genomic research, large-scale initiatives, rare disease research, families, and paediatrics.
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Consent Toolkit
Benefits
- Provides template responses help researchers and clinicians efficiently draft consent forms
- Includes customisable responses that are easily adaptable across contexts
- Represents clauses in a machine-readable way to promote efficient and accurate data sharing
Target users
Researchers, and clinicians
Publications
Documents
| Date | Title |
|---|---|
| 14 September 2023 | Code of Ethics and Community Conduct (CECC) |
| 23 June 2022 | Clinical Genomic Consent Clauses (v1.0) |
| 21 April 2022 | Large Scale Initiatives Consent Clauses (v1.0) |
| 27 October 2021 | Pediatric Consent to Genetic Research Clauses (v1.0) |
| 20 January 2021 | Familial Consent Clauses (v1.0) |
| 28 September 2020 | Minutes: Consent Workshop, 9th Plenary |
| 8 July 2020 | Consent Clauses for Genomic Research (v1.0) |
| 11 March 2020 | Minutes: consent workshop |
| 31 January 2020 | Minutes: working meeting on consent |
| 1 August 2019 | Model consent clauses for rare disease research (v1.0) |
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