Frances Shani Parker, Author

African Americans have a long history of valid reasons to distrust America’s healthcare system, particularly regarding medical research. Incidents go far beyond the well known Tuskegee Institute Syphilis Experiment, in which the U.S. Public Health Service allowed almost 400 African American men with the disease to go untreated, while pretending to treat them. Ultimately, the men died and unauthorized autopsies were done as part of the experiment. Numerous researched atrocities of involuntary experimentation targeting African Americans, including those in military and prison environments, can be cited throughout history to the present.

It is critically important that African Americans are informed, vigilant, and empowered when dealing with researchers and healthcare institutions. The burden of establishing trust primarily rests with America’s healthcare system that caused the distrust, not the victims who continue to suffer from ongoing tragedies of cradle-to-grave disparities impacting them even when income, health insurance, and access to care are the same among various racial-ethnic groups. In addition to generational suffering and repercussions on many levels, illnesses create long-term economic burdens and major losses of productivity in society.

An example of a church-based end-of-life dementia education research project was conducted at four large urban African American churches. Serious trust building is needed in the church community to recruit African Americans for church-based hospice and palliative care research. Not surprisingly, church leaders voiced mistrust concerns, including mistrust concerns of previous researchers who conducted investigations in their faith-based institutions. The following strategies were used to decrease the mistrust concerns:

1) Face-to-face, in-depth interviews were conducted from a convenient sample of four established AA church leaders.

2) Interviews were held in the informants’ churches to promote candor and comfort in revealing sensitive information about trust /mistrust.

3) Content analysis framework was used to analyze the data.

4) Elements identified from the analysis were then used to create themes about positive and negative experiences with researchers, violation of trust, and trust building strategies.

In conclusion, findings suggest that researchers who wish to conduct successful studies in African American religious institutions must implement trust-rebuilding strategies that include mutual respect, collaboration, and partnership building. If general moral practices continue to be violated, future hospice and palliative care research within the institutions may be threatened. If this happens, benefits of church members, the African American community, and advancement of end-of-life care all suffer.

In the following video, Dr. Janel Johnson of the National Institute on Aging emphasizes the important need for African American volunteers in research studies in order to treat various diseases effectively, particularly as disease treatments have become more person-centered and working better for different people.