Biobank research: Time for discussion and debate

Fundamental Considerations for Biobank Legacy Planning

“…Operationally, destroying specimens under the control of the biobank may be less complex than ensuring the destruction of resources that have been provided to third parties. 13 From an ethical standpoint, the controlled destruction of biospecimens following consent for use by a biobank or a specific project may not be a straightforward decision 12 ; typically, this is not a part of the conversation in the initial informed consent process, and thus, participant attitudes to destruction and disposal of biospecimens are largely unknown.…”

Biobanks in South Africa: A global perspective on privacy and confidentiality

“…that an 'ethico-regulatory framework' that is exclusively focused on biobanks [16] and in concurrence with all the principles of the UDBHR and international guidelines for biobanks should be developed and implemented in SA in the near future. [7][8][9] …”

“…informed consent, privacy and confidentiality, sharing of benefits, and many other ethical challenges. It is surmised that there are >12 biobanks of different sizes in SA, [7][8][9] but there is currently no national instrument that focuses exclusively on the ethics of biobanks. The National Health Act No.…”

“…[12,14,15] The following two examples serve as explanation: (i) consent to use blood samples doesn't automatically open the space to psychological information; and (ii) consent to use biological spaces for researching diseases doesn't mean that biological material may be used for creating human embryos. [9] Currently, it seems (in line with the draft Declaration on Ethical Considerations Regarding Health Databases and Biobanks of the World Medical Association (WMA) [16] and in light of the UDBHR's Article 9) as if a concept such as broad informed consent could be problematic, as it cannot be specific. Broad consent permits donor use of biological materials for future studies, subject only to further prior ethics review and approval.…”

“…The National Health Act No. 61 of 2003 offers no ethical guidelines for biobanks; [9] therefore, the only national document that is currently directional in this regard is the Ethics in Health Research: Principles, Processes and Structures of 2015, updated from the 2004 guidelines [7,10] of the Department of Health (DoH). In the Foreword and Acknowledgements, this document expresses its status as the national policy for conducting research responsibly and ethically, as mandated by Section 72 of the National Health Act No.…”