55% of respondents describe misconduct by medical research scientists as being a moderate or a very big problem.
The Pew Research Center shared survey results regarding the multifaceted views Black Americans hold when it comes to medical research. Although Black Americans shared that they either have a great deal or a fair amount of confidence in medical scientists to act in the public’s best interest, 55% of respondents describe misconduct by medical research scientists as being a moderate or a very big problem.
Black Americans’ doubt in medical scientists is not unfounded. Just recently a former Harvard professor of ophthalmology retracted eight research papers over ethics concerns and lack of approval from regulatory boards meant to prevent research misconduct. Nearly every day the blog Retraction Watch, which shares recent retractions and research fraud, posts something new about scientists across the globe faking data and foregoing necessary ethics procedures among other heinous acts. A quick scroll through the webpage will reveal that misconduct happens in all fields of medical research including cancer, neurodegenerative diseases like Alzheimer’s and chronic deep tissue conditions like osteoarthritis.
However, Black Americans have other specific examples as to why they doubt the ability of medical researchers to avoid misconduct. Particularly resonant is the infamous and diabolical Tuskegee Syphilis Study, which took place in the U.S. between 1932 and 1972 and recruited Black men with the disease to study its pathogenesis. Researchers purposefully withheld treatment from these men from 1943 onward when penicillin was introduced as an effective treatment.
But the history of racism, bias and misconduct involving Black Americans involved in medical research isn’t as old news as some would like to believe. Over the past two years, systemic racism has played a role in disproportionately affecting Black people during the COVID-19 pandemic. According to the Harvard Gazette, “Black and brown Americans” have been two to three times more likely to be hospitalized, twice as likely to die and overall, more likely to contract the virus. The pandemic has uncovered long-known disparities in communal health that put people of color at astronomical disadvantages when it comes to taking charge of their health, such as poverty, greater exposure to pollution and less access to healthy foods.
Accounts of medical misconduct directed toward Black Americans from the past also still crop up in the news today, showing the proliferative effects of mistreatment. In October 2021, Thermo Fisher was sued over profiting from allegedly stolen HeLa cells, important cells that have led to major scientific breakthroughs over the decades. The cells were originally “stolen” from a Black woman named Henrietta Lacks who underwent treatment for cervical cancer at Johns Hopkins and did not consent to her cells being used scientifically. To this day, Lacks’ family is fighting for reparations and acknowledgment from scientific researchers who played a role in the ethical violation.
Beyond sharing concerns about medical research misconduct, Black Americans surveyed also expressed concern about their ability to access quality medical care. Black adults view this disparity in health care as a driving reason as to why the life expectancy of Black people is currently the lowest it has been since 2000 and is below the estimates for other racial and ethnic groups.
The bottom line is that the medical community, researchers and clinicians alike, must begin to address the issues that the Black community continues to bring forth through surveys and personal advocacy. The systemic issues need to be addressed from many avenues, including increasing the inclusiveness of STEM spaces to promote Black Americans being able to become involved in science and research themselves, putting public health policies in place to address the impacts of systemic racism and continuing to expand clinical trials to include more people of color for accurate data concerning disease pathogenesis and treatment.
