The SRA Symposium - College of Medicine

Papers
As a three hospital health care system, the demographics of the populations that AHS
serves are very different. Morristown Memorial Hospital is in Morris County whose minority
population is 18% of the total, whereas Overlook Hospital is in Union County with a 46% minority
population and Mountainside Hospital is in Essex County with the highest number of minorities
representing 62% of the total of that county’s population. A cursory glance at the enrollment
numbers was all that we needed to see that, while the participation of women in our studies was
reflective of our population, our minority participation was low – lower than we expected. But, we
rationalized, the IRB had always reviewed the application and protocol noting that inclusion and
exclusion were properly outlined and if a study might serve a non-English speaking population,
the consent form would be duly translated.
Before our Human Subject Protection Department began a zealous campaign to improve
our minority participation numbers, a more thorough understanding of why our enrollments were
unsatisfactory was necessary. The issue before us certainly was deeper than just a mathematical
equation. It was more than merely developing a simple tool for the IRB to check off a box to document
that all regulations had been met. What follows is a discussion of some of the basic concepts
we began to explore as we sought to better understand this principle of justice.
What is Fair? What is Equitable?
The underlying premise of the NIH directive is that it is unfair for minorities or women
not to be represented in research. It infers that fairness is measured by distribution. “The term distributive
justice refers to fair, equitable, and appropriate distribution determined by justified norms
that structure the terms of social cooperation” (Beauchamp, p 226). While, there may be several
possible goals of minority inclusion in research (Corbie-Smith), there is general agreement that
overcoming disparities in research would have a positive effect in overcoming specific minority
healthcare disparities as well.
But looking to reporting mechanisms as measurement of this inclusion is problematic.
Do we, as was our initial inclination, expect the percentage of minorities in our research studies
to mirror those of our community? This negates the importance of looking at the disease process
itself. For example, African American males have a much higher incidence of prostate cancer than
white males. The New Jersey aged-adjusted incidence rates for 2000 were 191.4 per 100,000 white
men and 281.4 for African American men and the age-adjusted prostate cancer mortality rate
among African American men was 2 ½ times the rate for white men (Center For Health Statistics,
2003). Thus a one to one match would still indicate a glaring disparity.
In addition, looking only at enrollment numbers retrospectively gives a snapshot of what
is happening at an institution, not necessarily what should be happening. It is important to view
the NIH directive from at least two perspectives: 1) minorities should be represented in the studies
that are offered by an institution and 2) research institutions should be offering studies that address
the unique needs or interests of minority populations. A community member from the IRB
of the University of Medicine and Dentistry NJ speaking at one of their recent conferences, while
praising the many contributions to science of the institution, challenged the group asking for more
research on the infectious diseases that ex-prisoners and drug addicts are bringing back to the
streets. He continued, noting that practically every home in Newark has a nebulizer, that there is
an imperative need for more asthma studies in his community.
58 2005 Symposium Proceedings Book