Responsible sharing of biomedical data and biospecimens via the "Automatable Discovery and Access Matrix" (ADA-M)

Abstract

Given the data-rich nature of modern biomedical research, there is a pressing need for a systematic, structured, computer-readable way to capture, communicate, and manage sharing rules that apply to biomedical resources. This is essential for responsible recording, versioning, communication, querying, and actioning of resource sharing plans. However, lack of a common "information model" for rules and conditions that govern the sharing of materials, methods, software, data, and knowledge creates a fundamental barrier. Without this, it can be virtually impossible for Research Ethics Committees (RECs), Institutional Review Boards (IRBs), Data Access Committees (DACs), biobanks, and end users to confidently track, manage, and interpret applicable legal and ethical requirements. This raises costs and burdens of data stewardship and decreases efficient and responsible access to data, biospecimens, and other resources. To address this, the GA4GH and IRDiRC organizations sponsored the creation of the Automatable Discovery and Access Matrix (ADA-M, read simply as "Adam"). ADA-M is a comprehensive information model that provides the basis for producing structured metadata "Profiles" of regulatory conditions, thereby enabling efficient application of those conditions across regulatory spheres. Widespread use of ADA-M will aid researchers in globally searching and prescreening potential data and/or biospecimen resources for compatibility with their research plans in a responsible and efficient manner, increasing likelihood of timely DAC approvals while also significantly reducing time and effort DACs, RECs, and IRBs spend evaluating resource requests and research proposals. Extensive online documentation, software support, video guides, and an Application Programming Interface (API) for ADA-M have been made available.

Fig. 1

“The ADA-M Archetype”: The different combinations of numbers and shapes illustrate how an ADA-M metadata profile can accommodate many different permutations of regulatory factors and considerations, so that even highly complex information retains the standardized structure necessary for interoperable ICT contexts

Fig. 2

“Example of a Basic ADA-M Profile”: This illustration demonstrates how ADA-M creates a relatively basic metadata profile for a cancer research resource so the resource can be discovered by a suitable researcher. Whether simple or complex, the ADA-M Profile maintains the same standardized structure necessary for interoperable ICT contexts so such queries can be managed effectively