There is a radical change
underway in how translational research is being, and increasingly will be, performed. Traditionally, researchers devised a hypothesis and obtained funds and ethical permissions for an evaluation of the premise. This cycle was repeated with an inevitable waste of valuable clinical material at each stage. It is recognized that biobanks maximize usage of samples, supply well-characterized cohorts of biological samples and clinical data, and can provide ethical and regulatory permissions. This allows research to proceed more rapidly and efficiently, enabling a wide range of studies to be performed on the same population. Indeed, biobanking was hailed by Time
magazine in 2009 as “one of the ten ideas which are transforming the world right now
The Infectious Diseases BioBank (IDB) was established in 2006 and archived blood fractions (plasma, sera, DNA, and live lymphocytes) from patients infected with human immunodeficiency virus (HIV), hepatitis B or C viruses, or invasive bacteria, from patients with some autoimmune conditions, as well as from controls.2
By far the largest archive is currently that of HIV-infected patients, wherein the IDB has selected to recruit longitudinal blood donations from patients with interesting patterns of disease (rapid progressors, long-term nonprogressors, recent seroconverters, as well as those starting therapy).
The IDB recruits volunteers from patients among the diverse population of Southeast London, UK. Organ donations can be low among ethnic minorities, and in the United States, this has stimulated education programs, which have partially redressed the situation.3
Consequently, we had concerns that the IDB may not be representative of the local community. This is critical, because translational research will increasingly become dependent upon biobanks and a bias in the populations from the outset could lead to unrepresentative research findings. Over time this may preclude the development of appropriate diagnostics or therapies for all. There is also a strong argument against locating such clinical archives in ethnically homogeneous cities. Our local population is multiethnic, with the most commonly spoken languages after English being Yaruba (West African) and then Portuguese.4,5
The IDB was established in 2007 and is thus in its infancy compared with many long-established biobanks. In this analysis, we determine whether the patients who have volunteered to date are representative of the local community and, if not, devise new recruitment strategies to correct any disparities at an early stage.