Online Program

Who is Represented in the Nation's Biobanks

Monday, November 2, 2015

Elizabeth Cohn, PhD, RN, College of Nursing and Public Health, Adelphi University, Garden City, NY
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.

Learning Areas:

Diversity and culture
Ethics, professional and legal requirements
Public health or related public policy

Learning Objectives:
Identify the importance of ancestral representation in biobanks. Describe current demographic representation. Identify populations at-risk for under-representation. Compare alternative methods for representation to decrease health disparities.

Keyword(s): Health Disparities/Inequities, Minority Research

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the lead investigator and the author of this work.
Any relevant financial relationships? Yes

Name of Organization Clinical/Research Area Type of relationship
Robert Wood Johnson Foundation N/A This work is funded by the Robert Wood Johnson Foundation

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.