Patient trust as the most precious prerequisite in health research
Health research cannot be done without the active participation of patients. This especially concerns those who suffer from an incurable disease, should it be common plagues of today such as cancer, Alzheimer’s, or rare and complex disorders. Data collected for monitoring the safety and efficacy of drugs are analyzed for patterns that reveal more information about the products’ benefit: risk profile. Electronic health records are mined for associations and potentially causal links between medications and adverse and unexpected outcomes. Active engagement involves the sharing of pathologic specimens, histological samples, imagery, DNA, autopsy findings, and a wealth of data that enable linking the outcome and course of the disease to the patient’s genotype and administered treatment.
Generalizability of findings from interventional and observational studies and treatment outcomes depends on enough patients enrolling in clinical trials and donating their bodies to science after they die. Continued use of this data requires a precious prerequisite we have been taking for granted. This essential condition without which no research can exist is patient trust.
Last week, news came out that Jim Stauffer from Arizona is suing the Biological Research Center (BRC) for using his mother’s body to test the impact of explosives. His mother, Doris Stauffer, died in a hospice more than five years ago. Because she suffered from a rare form of Alzheimer’s, her body was donated by the family for research in a hope to help elucidate the biology of the disease. The family specified what the body can and cannot be used for. In 2014, the FBI raided the Biological Research Center and discovered untagged body parts that were sold to various middlemen. The company specialized in free pick up of corpses that were supposedly used for research but sold as crash test dummies all over the world. The details of the case are gruesome and heartbreaking for the unsuspecting families.
While organ donation is a highly regulated business, body donation for scientific research, medical training, and other purposes is largely unregulated trade. By offering free cremation in exchange for the body, body brokers prey on the poor . Medical research depends on the active participation of patients and their relatives. Nonconsensual use of bodies donated for science as crash test dummies is an ugly betrayal of trust. Unless the public can rest assured that science treats the deceased with dignity and the respects the terms of the donation, health research will lose many meaningful opportunities to better understand the disease.
 Waitt, T. (2019). FBI Finds Bodies Sewn Together in Human Chop Shop (Multi-Video) – American Security Today. Retrieved 4 August 2019, from https://americansecuritytoday.com/fbi-finds-bodies-sewn-together-in-human-chop-shop-multi-video/
 Grow, B., & Shiffman, J. (2017). Cashing in on the donated dead. The body trade. Retrieved 4 August 2019, from https://www.reuters.com/investigates/section/usa-bodies