Improving Health Disparities in the African-American Community by Educating Pastors and Local Churches on the Risks and Benefits of Clinical Research
June 16, 2012 Walden UniversityCapstone (CLRA-6560-1) Jerome Q. Kinard
It is critical that we increase the enrollment rate of African-Americans participating in clinical research. African-Americans respond much differently to treatments than other groups (Martin, 2010). The African-American church has historically been an agent of social change throughout our nation’s history (Levin, 1984). One solution to changing the lack of participation of African-Americans in clinical research is to educate local pastors and churches on the risk and benefits of clinical research particularly as it relates to the Belmont Report.
48% of African-American adults are experiencing some kind of chronic disease whereas among the general population the number is 39% (HealthReform.gov, 2012). 70% of African-Americans between the ages of 18 and 64 are either overweight or obese (HealthReform.gov, 2012). African-American men compared to white men are 50% more likely to suffer from prostate cancer (HealthReform.gov, 2012). 15% of African-American adults suffer from Type II diabetes whereas the disease rate among white Americans is 8% (HealthReform.gov, 2012). African-Americans are 7 times more likely to contract HIV than white Americans (HealthReform.gov, 2012).
308.7 million people living in the United States (Rastogi et al., 2011). Those who identify as being Black or African- American equals 38.9 million (Rastogi et al., 2011). Another 3.1 million identifying themselves as Black/African-American and of another racial group (Rastogi et al., 2011). Combined total of those who identify themselves as African-Americans at 42 million (Rastogi et al., 2011).
U.S. Public Health Service sponsored a study in collaboration with the Tuskegee Institute in 1932 (CDC, 2011). Recorded the natural progression of syphilis in an attempt to justify a treatment program for Blacks (CDC, 2011). 600 African-American men in the initial study 399 had the disease and 201 did not (CDC, 2011) Intended to last only 6 months, but, in actuality, lasted 40 years (CDC, 2011) Subjects did not have the benefit of informed consent (CDC, 2011) Lied to by investigators after being told that they were receiving treatment for “bad blood” (CDC, 2011)
U.S. Supreme Court’s legally sanctions practice of eugenics in 1927 (Ostendorff, 2012). North Carolina Eugenics Board’s primary goal was to get rid of poverty, addiction, and crime (Kickler, 2012). North Carolina social workers were granted power to recommend sterilization to the Eugenics Board any person deemed undesirable (Kickler, 2012). The number of North Carolinas intended for sterilization were disproportionately African- American (Kickler, 2012).
1927 Segregated Lyles Station, Indiana (Reese, 2011) At age 5, given excessive radiation treatment by healthcare workers (Reese, 2011) Slow dissolution of bone manner in his skull throughout his life (Reese, 2011)
There are several ways that we can educate individuals and families on the risks and benefits of clinical research. For example, physician- investigators who already have established relationships of trust can educate their patients, particularly, on clinical research being conducted where they live. Patients are more inclined to participate in a clinical trial recommended by their doctor than they are in response to an ad posted on Craigslist.com recruiting patients from someone that they do not know.
Partnering with Historically Black Colleges and Universities (HBCUs) to serve as clinical trial sites (HBCU Direct, 2012) Doris Duke Clinical Research Experience for High School Students (CREHSS) ◦ Grant program where African-American high school students are exposed to clinical research activities in hopes of encouraging minority students to choose careers in biomedical research (Doris Duke Charitable Foundation, 2010).
Primary focus should be on educating pastors and local churches on the risks and benefits of clinical research The African-American Church historically has held a place of great significance within the African-American community (Levin, 1984) Significant influence on the African-American community (Levin, 1984) African-American pastors are often viewed as more than just preachers many also serve as educators, politicians, and business people (Levin, 1984)
In 1974, the U.S. Congress passed the National Research Act, in reaction to the injustices of the Tuskegee Syphilis Experiment (Zimmerman, 1997). Eleven men and women were appointed by the U.S. Congress to the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Subjects whose task was to establish some basic rules and guidelines for the ethical treatment and protection of human subjects (Zimmerman, 1997). In 1979, the commission published what is considered in the U.S. the primary ethical guideline for the conduct of clinical research: The Belmont Report (Zmmerman, 1997).
Application of respect for persons can be seen in the application of informed consent (NIH Office of Extramural Research, 2011) Application of the ethical principle of beneficence can be seen in the use of Institutional Review Boards (IRBs) (NIH Office of Extramural Research, 2011) Application of the ethical principle of justice can be seen in the recruitment of research subjects (NIH Office of Extramural Research, 2011).
Show pastors that their churches can serve as a resource center by partnering with local investigators to provide informational classes on clinical trials that they are currently recruiting for.
Show pastors that by educating their parishioners on the risks and benefits of clinical research that they are helping to eliminate the health disparities that exists within the African- American community. For example, Lawndale Community Church in Chicago offers primary care services without regard to income and it serves as a resource to help eliminate health disparities that exist between African-Americans and those of the general population (Lawndale Christian Health Center, n.d.).
The number 1 cause of death within the African-American community is heart disease (CDC, 2010). Show pastors that the biggest threat to the African-American community is heart disease and that encouraging them to educate their parishioners on the risks and benefits of clinical research may help save lives of those living in their communities.
Investigators Clinical Research Associates/Coordinators Clinical Data Managers
Several strategies can be and are being employed to narrow the gap between African-Americans and the general population. One of the most effective strategies would be to enlist local pastors and churches to get involved by educating them on the risks and benefits of clinical research, particularly as it relates to the Belmont Report.
Center for Disease Control and Prevention (CDC). (2011). U.S. Public Health Service Syphilis Study at Tuskegee. Retrieved May 30, 2012 from http://www.cdc.gov/tuskegee/timeline.htm HealthReform.gov. (2012). Health Disparities: A Case for Closing the Gap. Retrieved May 28, 2012 from http://www.healthreform.gov/reports/healthdisparities/ Kickler, T. (2012). North Carolina History Project: Compensation for Victims of Eugenics Gains Notice. Retrieved June 2, 2012 from http://www.northcarolinahistory.org/commentary/683/en try Levin, J. (1984). The Role of the Black Church in Community Medicine. Retrieved May 8, 2012 from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2561772/ pdf/jnma00239-0055.pdf
Martin, P. (2010). Part 1: Long After Tuskegee, Blacks Still Leary of Clinical Trials. Retrieved May 9, 2012 from http://www.blackvoicenews.com/news/news-wire/44950-part- i-long-after-tuskegee-blacks-still-leary-of-clinical-trials.html Rastogi, S., Johnson, T., Hoeffel, E., & Drewery, M. (2011). The Black Population: 2010. Retrieved May 28, 2012 from http://www.census.gov/prod/cen2010/briefs/c2010br-06.pdf Doris Duke Charitable Foundation. (2010). Clinical Research Experiences for High School Students. Retrieved June 7, 2012 from http://www.ddcf.org/Medical-Research/Program- Strategies/Clinical-Research/Clinical-Research-Experiences-for- High-School-Students/ HBCU Direct. (2012). Health Disparities Initiative. Retrieved June 7, 2012 from http://www.hbcudirect.com/index.php?option=com_content&tas k=view&id=4&Itemid=6
Center for Disease Control and Prevention (CDC). (2010). Black or African-American Populations. Retrieved May 1, 2012 from http://www.cdc.gov/omhd/Populations/BAA/BAA.htm Lawndale Christian Health Center. (No Date). Lawndale Christian Health Center: Helping God, Helping People. Retrieve June 11, 2012 from http://www.lawndale.org/ Ostendorff, J. (2012). N.C. may compensate sterilization victims. Retrieved June 1, 2012 from http://www.usatoday.com/news/nation/story/2012-05- 22/sterilization-compensation-north-carolina/55173250/1 Reese, G. (2011). Radiation and the young: like sheep to slaughter. Retrieved June 2, 2012 from http://www.ourweekly.com/features/radiation-and-young- sheep-slaughter
National Institutes of Health (NIH) Office of Extramural Research. (2011). Protecting Human Research Participants. Retrieved June 3, 2012 from http://phrp.nihtraining.com/users/PHRP.pdf Zimmerman, J. (1997). The Belmont Report: An Ethical Framework for Protecting Research Subjects. Retrieve May 12, 2012 from http://www.impactcg.com/docs/BelmontReport.pdf