What is it? Why is it important?
Health care providers gather health information to support on-going patient care. The Declaration of Taipei provides ethical principles for:
- The collection, storage and use of Biological Material (BM) and Health-Related Personal Data (HrPD) beyond individual patient care
- The deployment and use of health databases and biobanks including its governance
Based on the Declaration:
- A health database is a system for collecting, organizing and storing health information
- A biobank is a collection of BM and associated data
- BM is a sample obtained from an individual human being, living or deceased, which can provide biological and genetic information about that individual
The declaration of Taipei works in accordance with the Declaration of Helsinki, which lays down ethical principles for:
What do I need to do?
Make yourself familiar with the Declaration of Taipei and its ethical principles to ensure that:
- Health databases and biobanks used in research contribute to the benefit of society and its public health objectives
- EC approval is received prior to using BM/HRpD for research
- The dignity, autonomy, privacy and confidentiality of research participants are respected
- Participants who consent to their BM/HrPD being used for research are adequately informed (e.g. purpose, rights, data protection, risks, data transfer)
In order to foster public trust and quality assurance, the Declaration offers important principles needed for the governance of health databases and biobanks.
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.
- Biobank Regulation
Declaration of Taipei – see in particular principles
- 8 – 19 Ethical principles
Declaration of Helsinki – see in particular principles
- 3 - 15 General principles