Table 4 Overview of main rights and obligations of custodians and applicants
From: Qualitative study on custodianship of human biological material and data stored in biobanks
1. Rights and obligations in relation to the decision on access to HBM and data | |
A. Rights of custodian | Decide on access to HBM and data |
Evaluate availability and suitability of HBM and data for project | |
Evaluate impact on existing collection of HBM and data | |
Determine priorities between different research projects | |
B. Obligations of custodian | Have the disposal of sufficient expertise/experience |
Act independently | |
C. Rights of applicant | Access collection of HBM and data |
Use HBM and data in research projects | |
Keep certain information confidential | |
Priority access in case applicant collected HBM and data | |
D. Obligations of applicant | Use for specific project within certain time period |
Provide synopsis of project | |
2. Right to decide on leftover HBM | |
A. Rights of custodian | Decide on return or destruction |
Decide on use in new or follow-up project | |
Verify leftover HBM | |
Provide minimum amount of HBM | |
B. Obligation of applicant | Inform biobank about leftover HBM |
Return or destroy leftover HBM | |
Submit new request for new use of HBM | |
Prohibition to transfer to third party | |
3. Right to participate in benefits of research project | |
A. Rights of custodian | Charge access fee |
Request return of some of the benefits | |
Share in benefits of research project | |
B. Right of applicant | Enjoy benefits of research project |
C. Obligations of applicant | Pay access fee |
Return some of the benefits to biobank | |