Who is Represented in the Nation's Biobanks

Background: Achieving minority participation in biobanking is a clinical imperative and ethical mandate. We identified populations at risk for being underrepresented in biobanks.

Methods: The study aims were to (1) identify a national sample of research biobanks; (2) determine demographics of those enrolled; (3) compare the demographics to the U.S. census; (4) describe recruitment and enrollment materials; and (5) establish the percentage linked to medical records. We report on biobanks nationwide which are open to researchers conducting genetic studies.  

Results:  In 51 biobanks, Whites were represented equal to their percent in the population (p=1.0). Asians, 7% in the population were represented at 13% in biobanks (p=0.00); Blacks and African Americans 12% in the U.S. population comprised 11% in biobanks (p=0.83) and Hispanics and Latinos represent 13% of the population but had only 7% representation in biobanks (p=0.00). Twenty-nine percent (15/51) of specimens were linked to medical records. No biobanks provided materials in languages other than English, 90% of the websites and 40% of the brochures exceeded a fifth grade reading level.

Conclusions: In order for clinical genetics to advance health equity, intentional recruitment of diverse populations into biobanks will be necessary. The use of tailored materials for recruitment and enrollment is suggested.