Table 1 Choices in the informed consent of CHRIS baseline.
From: Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process
Options | Type of choice | |
|---|---|---|
Q1. Consent to the visit | Yes | “Yes” is necessary for participation |
No | ||
Q2. Consent to data and samples processing | Yes | “Yes” is necessary for participation. Changeable upon withdrawal |
No | ||
Q3. Consent to data storage | Yes | “Yes” is necessary for participation. Changeable upon withdrawal |
No | ||
Q4a. Consent to data sharing with defined partners | Yes | Free-choice answer and changeable over time |
No | ||
Q4b. Consent to data sharing through portals | Yes | Free-choice answer and changeable over time |
No | ||
Q5. Options for medical reports delivery | At the CHRIS study | One option is necessary for participation |
Sent at home | ||
Q6. Awareness of pedigree study | Yes | “Yes” is necessary for participation |
No | ||
Q7. Consent to re-contact | Yes | Free-choice answer and changeable over time |
No | ||
Q8. Awareness of no economic benefit | Yes | “Yes” is necessary for participation |
No | ||
Q9. Consent to biobanking | Yes | “Yes” is necessary for participation. Changeable upon withdrawal |
No | ||
Q10. Death dispositions options | Destruction of data and samples | Free-choice answer and changeable over time |
Anonymisation of data and samples | ||
Further use in research within the limit of the consent | ||
Q11. Awareness of research purpose | Yes | “Yes” is necessary for participation |
No | ||
Q12. Return of individual research results | Want to be informed | Free-choice answer and changeable over time |
Do not want to be informed | ||
Informed only if results are relevant for own health and actionable | ||
Informed only if results are potentially relevant for relatives’ health |
