As history shows, it is almost a guarantee that each one of us will be touched by a chronic disease, if not ourselves, then a family member or friend. Clinical trials are the gold standard for testing promising new strategies for preventing, diagnosing, and treating such ailments. For example, the cancer drugs used over the past five years were tested in clinical trials conducted five to ten years ago and, based on those studies, these new drugs are expected to improve future survival rates.
Yet, according to the National Cancer Institute, only 3 percent of adult cancer patients participate in clinical trials. People who are older, women and members of minority communities are even less likely to participate. This is quite a contrast with the 60 percent of children with cancer who participate in clinical trials. This contrast is widely recognized as a central factor in contributing to the dramatic increase in cancer survival rates among children.
Among minority populations, there have been tragic historical events that can readily explain the African American community’s reluctance to engage in clinical trials research. While this reluctance is not limited to the African American community, the widespread concerns about involvement in research may originate here: if one group’s rights can be compromised in the scientific arena, can anyone really feel truly protected?
Fortunately, while fear-based reluctance to engage in research is genuine and factually based, many protections have been put into place and are rigorously monitored to significantly reduce the risk that such abuses will occur in the future. In science today, all the players are known and must register their research plans for prior approval, and deviations from the highest ethical standards can wipe a scientist’s rights to conduct future research. This is a protection that is not obvious to the public and a consideration that needs to be better disseminated.