Biobank Legacy Planning: Preparing for the Worst Case

Legacy planning is an essential step in establishing and maintaining a biobank, given the time and expense involved as well as the responsibility to use donors’ precious resources appropriately. Legacy planning involves preparing for circumstances that may result in biobank closure or significant operational changes. Matzke et al. (2016) describe some of the fundamental considerations for preparing and executing a legacy plan.¹

In the United Kingdom, membership in the National Cancer Research Institute’s Confederation of Cancer Biobanks requires biobanks and institutions to sign a memorandum of understanding and agree to alignment with a common set of guiding principles, which include maintaining continuity. Operationally, a biobank needs to consider funding stewardship and the costs associated with closure and redistribution of its contents. Other considerations include making sure that biospecimen information remains up-to-date and accurate, which ultimately aids in estimating biospecimen transfer costs.

The authors suggest that, prior to formulating a plan for any biospecimen transfer, it is vital to assess the current state of a collection. This should include a review of the biobank to verify the elements of the collection, such as the following:

• Number of biospecimens
• Format of biospecimens
• Biospecimen storage, including aliquot sizes and types of containers
• Previous biospecimen use, including freeze–thaw events and remaining aliquots
• Data storage and any relevant linkages to other data sources
• Coding format or system and level of data privacy, including anonymization or de-identification details
• Consent status (informed consent details or basis for a waiver of consent)

Following a complete analysis, custodians should then assemble a list of likely biobanks and research groups that may be interested in acquiring the materials and/or actively seek third parties to determine the logistics involved in transferring the biospecimens.

Matzke et al. highlight the need to ensure that custodians communicate the fate of the biospecimens, where necessary, to all relevant stakeholders. Furthermore, custodians need to consider ethical, legal and social issues that have implications with regard to participant privacy, autonomy and dignity.

Although biobank closure may seem like a distant or unlikely event, the authors argue that it is equally important to address as pressing operational issues. They expect further best practice and policy development around biospecimen and data transfer. This includes end-of-biobank issues and destruction of biospecimens as well as appropriate local and national regulations.

Reference
1. Matzke, L.A., et al. (2016) “Fundamental considerations for biobank legacy planning,” Biopreservation and Biobanking, 14(2) (pp. 99–106), doi: 10.1089/bio.2015.0073.