Table 1.
Choices in the informed consent of CHRIS baseline.
| 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 |
There are different types of questions in the informed consent: (a) questions where “Yes” is compulsory for participation and that are not changeable by the individual participant over time (Q1, Q2, Q3, Q5, Q6, Q8, Q9, Q11). However, some of those are changeable upon withdrawal (Q2, Q3, Q9); (b) questions where participants can choose among more options and that are changeable over time (Q4a, Q4b, Q7, Q10, Q12).