Natasha Blakeney, MPH, is the training director of the Education Network to Advance Clinical Trials (ENACCT). Founded in 2004, ENACCT is dedicated to improving cancer care and research through clinical trials. In this piece, reprinted from ENACCT’s blog, Natasha shares her perspective on increasing enrollment of African Americans in cancer clinical trials.
The National Cancer Institute (NCI) recently released a video discussing African Americans and their participation in cancer clinical trials. The video highlights some of the well-known challenges affecting this study participation, while noting the significance of cancer research in advancing the delivery of more personalized, state-of-the art cancer care to diverse populations. I appreciated NCI highlighting this important issue during Black History Month, drawing attention to the important role African Americans can play in cancer research. However, from my perspective as an African-American woman, this is a topic that should not be limited to acknowledgement once a year—it is a critical issue that needs attention all year long.
In my community, the topic of participation in cancer research can evoke a range of reactions, including distrust and fear on one end of the spectrum, and curiosity and enthusiasm on the other. Like the rest of the population, African Americans are not homogenous. This fact is important to acknowledge since there is a prevailing belief that we are not interested in research, are unwilling to participate, and may even be offended if given the option to take part in a clinical trial. A 2006 study showed that African Americans are just as willing to participate in medical research as others, but are less likely to be approached.
The bottom line? Cancer researchers cannot and should not make assumptions about our participation in cancer clinical trials. Not offering clinical trials as a treatment option to every eligible patient is a disservice and is disempowering. Ultimately, the power to decide whether to join a study should rest with the trial-eligible patient. Seen in that light, ensuring a culturally sensitive discussion presents an important opportunity to foster a greater understanding of the clinical trial process. Such a discussion may also highlight the existence of patient protections, with particular deference given to the concept of autonomy as detailed in the Belmont Report—every individual has the right to decide whether study participation is the right choice for her/him.
Does this mean that every African-American patient will say yes to clinical trial participation? No, it certainly does not. But one thing is certain; the prospect of African-American participation in cancer clinical trials is far greater when African Americans are asked, than when nothing is mentioned at all.
We can no longer accept simply despairing about low participation in clinical trials among African-American patients. Cancer researchers must take action by approaching all eligible patients, engaging in a meaningful, respectful dialogue about trials, and then letting the patient make her or his own choice. Now that’s making real progress in cancer care.