Fair Access Principle
CIGMR Biobank does not specify the access policy people should use.
But what we can say is that the one that was developed consensually between the participants in the UK DNA Banking Network has been working well, is simple and straightforward and is based on the way that successful collaborations in research have been conducted for many a year.
The UK DNA Banking Network policy is based on the principle of “fair access”. It is as simple as ABC. Indeed we call it “Access By Collaboration”.
The idea of fair access is drawn from the UNESCO International Declaration on Human Genetic Data (2003). Its Article 18 provides that states should regulate the cross-border flow of data and samples “so as to foster international…cooperation and ensure fair access”.
The aim is to have a policy that is fair to the subject or patient (privacy; confidentiality; ethical use of samples and data; with open methods of consent management and public engagement), fair to the collector (conferring the right to first access), fair to the investigator who wants to use a sample (requiring collaboration management to ensure transparency; enabling access to usable published / unpublished data; ensuring long term availability of the sample; with a minimum of administration) and fair to the collector’s and investigator’s institutions (IPR management: long term tracking of samples and data).
This policy is described in Yuille M, Dixon K, Platt A, Pullum S, Lewis D, Hall A, Ollier W. The UK DNA Banking Network: a “fair access” biobank. Cell Tissue Bank. 2009 Aug 12.
The simplest way of meeting these needs is to allow a bona fide researcher to interrogate (but not acquire) data about samples in one or more collections and to enable the researcher to then negotiate one-to-one with the PI of a collection. If the negotiation results in an agreement to collaborate then the PI will share both the samples and data themselves.
All the biobank needs to do is to facilitate the collaboration and to assure itself that the research investigation has been subjected to appropriate peer review and ethics approval where necessary.
All the collaborators need to do is to ensure that the new data from their investigation is used to enrich further the annotations to the samples.