Diversity, Equity and Inclusion of Black Women in Clinical Research
Historically, it has been noted that women have been underrepresented in clinical trials. However, over the last few decades, there has been a steady rise in the number of women participating in clinical research. This has been due to laws, regulations, and policies that require an equal representation of both genders in certain medical research. As much as the representation of women in clinical research has gone up, in certain therapeutic areas, women, especially of color remain underrepresented and underserved by clinical trials despite the efforts to mitigate the problem of inclusion in clinical trials.
In America, clinical trials which are an important step in bringing new medication to the market have been noted to have few black women participants, and this is the case even in diseases that affect more black women such as breast cancer, heart diseases, fibroids, and stroke.
Research has indicated that black women are 41 percent more likely to die from breast cancer as compared to white women. A few researchers believe that there might be a connection between the treatment and the lack of representation of black women in clinical trials for cancer treatment. It is reported that all cancer treatments approved by the Food and Drug Administration between 2008 and 2018 only had 3 percent of blacks. This is very low considering that this demographic is hit the most by cancer.
Whereas the blame can also be pointed to other social determinants of health such as lack of proper medical cover for a majority of black women or lack of financial muscle. The exclusion of black women from clinical trials is a big determinant of the problem.
Despite there being laws put in place to protect participants of clinical trials, black women who historically have had bad experiences in clinical trials still don’t trust clinical trials and have concerns about participating in the trials. On top of that, a majority of black women are rarely asked by their doctors to participate in clinical research.
For black women to be more willing to participate in clinical trials, the messaging might have to change. Black women can be informed that the trials are free and that there are laws to protect them during the clinical trials. There is a lot of misinformation about cancer trials that has been fed to black women that make them scared of participating in research such as “you don’t want the sugar pill because you’ll die”. It is stated that there is no sugar pill in cancer trials.
One important thing to note as a black woman in clinical research is that the lack of diversity in clinical trials for black women is not just because there is less representation of black female participants in the trial. The other factor is that there are also few black female researchers for diseases such as Alzheimer's. This is an important factor to look into because diversity in researchers usually leads to diversity in participants.
Black women in clinical research thus must be more proactive and lead trials where black women are underrepresented.
There are a few ways diversity and inclusion can be improved in clinical trials; one of them being the education of the participants and their families on the clinical research so that barriers such as mistrust related to research integrity that is common among black people are eliminated.
When black women feel included in the clinical research that is conducted through open communication, they might be more willing to be a part of these studies. The clinical trials can also be carried out in locations close to the homes of black people to increase participation. When logistics are made easier, more people can volunteer to be a part of these studies.
According to doctor Charlotte Owens, who is a gynecologist who has in the past conducted clinical trials on uterine fibroids that sampled a lot of black women, he states that to increase diversity in clinical research, it is essential to understand the audience one is trying to reach and use their trusted sources of information to draw them into the trials.