What is it? Why is it important?
- Biobank responsibilities: Biobanks must adopt adequate measures with the aim to inform the public about their activities (e.g. website, newsletter, scientific publications, conferences). Usually, Biobanks do not directly communicate with donors, but allow access to information through their public communication strategy
- Researcher responsibilities: Researchers inform their donors about their rights to:
- Receive information in the event of questions
- Be informed of results concerning their health
- Abstain from such information or designate a person who takes the decision for them
Donor communication and feedback can highlight biobanking processes in need of improvement. As a consequence, donor communication can feed into biobank improvement strategies.
What do I need to do?
As a biobank operator define the communication strategy. Ensure information remains current and applicable to donors.
As a researcher, define donor communication strategies that covers:
- Donor questions or requests, such as issues upon BM collection, concerns related to personal data, withdrawal of consent
- Incidental-findings / results. These are results obtained from the analysis of BM, and which could potentially be of health interest to donors
Regarding incidental-findings, set-up procedures that describe:
- What results do require donor contact and information?
- How can donor wishes be guaranteed? Donors can abstain from being informed about incidental-findings (e.g. if applicable, check information on the consent form (ICF))
- Who contacts the donor and is responsible for any potential follow-up (e.g. treating physician, genetic counsellor, study SP-INV/Site-INV)?
- How are donors contacted (e.g. by post, e-mail, phone call, private consultations)?
Where can I get help?
Your local CTU↧ can support you with experienced staff regarding this topic
Basel, Departement Klinische Forschung, CTU, dkf.unibas.ch
Lugano, Clinical Trials Unit, CTU-EOC, www.ctueoc.ch
Bern, Clinical Trials Unit, CTU, www.ctu.unibe.ch
Geneva, Clinical Research Center, CRC, crc.hug.ch
Lausanne, Clinical Research Center, CRC, www.chuv.ch
St. Gallen, Clinical Trials Unit, CTU, www.kssg.ch
Zürich, Clinical Trials Center, CTC, www.usz.ch
The Swiss Biobanking Platform (SBP) can provide you with support on this topic.
SOPs, Forms and Templates – see in particular
- Safety and complaint SOP
Declaration of Taipei – see in particular principles
- 14 Ethical Principles
- 21 Governance
HRA – see in particular articles
- Art. 8 Right to receive information
- Art. 19 Liability
HRO – see in particular article
- Art. 8 Information