Table 1.
Accountability mechanisms of biobanks located in Canada and Europe.
Domains | Mechanisms | Explanation |
---|---|---|
Communication | Communication platform | Physical and online public information contact points and platforms. |
Flow charts | Processes and structures within the biobank such as research processes, information technology infrastructure, accountability or departments that are publicly available. | |
Information for participants | Information in simple language for the public and participants, including consent material. | |
Protocol | The protocol of the biobank available to the public. | |
Scientific output | Results are published as open access scientific journals as well as lay summaries. | |
Compliance | International and national laws and codes | The biobank complies (or shows proof of compliance) with international and national legislation and codes that apply to the work of the biobank. |
Expert advice | Advisory committee | Committees composed of professionals and possibly lay representatives that provide advice on research strategy, future strategies, and other relevant action. |
Ethics committee | Committees that provide advice on different issues such as research ethics or review external data access applications. | |
Management committee | Committees that comprise of professionals and possibly lay representatives that decide on management strategies for the biobank. | |
External review | Certification | Certification for quality management by an audit organization. |
Ethics approval | National ethics review boards need to provide ethical approval to set up a biobank facility. | |
Internal procedures | Consent process | Consent processes and consent forms that are signed by sample donors. |
Policies | Policies that regulate data access, privacy or storage, for example. | |
Quality system and standards | A system that monitors quality and makes sure that the biobank adheres to national and international quality standards. | |
Standard operating procedure | Instructions written for routine activities of committees or laboratory activities within the biobank. | |
Partnerships | Affiliation | Affiliation to a professional association or network. |
Cooperation | The biobank stipulates agreements with other biobanks or research entities to adopt harmonized data processing policies. | |
Membership to umbrella organization | Membership to an umbrella organization that provides the governance structure for the biobank. |