Dear COS community,
As we celebrate this year’s Juneteenth, it is imperative that we reflect on its history and origin. Juneteenth marks the day that the last slaves in Texas were freed on June 19, 1865, two and a half years after the Emancipation Proclamation was issued. Although slave owners were aware of the Emancipation Proclamation, many chose to withhold this information from black people to continue to further their own wealth. This cycle of withholding information from black people to profit off of them is an ongoing issue today, and the scientific community is no exception. Some of the greatest advancements in science were achieved with no regard to the injustice it caused to black people.
The founder of gynecology, J. Marion Sims, developed his practice at the expense of enslaved black women. He believed that black people had a higher pain tolerance than white people, leading him to perform human experiments on black women, without consent and without the use of anesthesia. It was not until he perfected his surgeries on enslaved black women such as Anarcha, who alone received 30 surgeries, did he begin using anesthesia on his white patients.
In 1932, Tuskegee University began a study on syphilis involving 600 black men. The men were told only that they would receive free healthcare for the treatment of a “bad blood”, latent illness. In reality, this study was to track the full progression of untreated syphilis. Not only were 399 black men purposely infected with the disease and misinformed, but they were also left untreated, despite the discovery of penicillin as a treatment in 1945. Researchers allowed the disease to ravage the men, their families, and entire generations. It was not until the media exposed the true intentions of the heinous and immoral study that it was finally put to an end in 1973. For 40 years, black people were treated as disposable test subjects left to die.
In 1951, Henrietta Lacks, a 31-year-old black woman, went to Johns Hopkins Hospital to be treated for cervical cancer. Her biopsied tissue was taken to a lab, without her consent to study cervical cancer. Lacks’ cells were unique at the time because they evaded normal cell division patterns (or cellular senescence). Due to a mutation affecting cell proliferation, Lacks’ cells were able to continuously divide, achieving an immortality not known to scientists at the time. Her cells became the first immortalized human cell line, as we know it. Research on these cells contributed to several Nobel prizes, and a multitude of developments in biomedical research. Henrietta Lacks succumbed to her condition later that year, but she continues to live on as HeLa cells. Her cells have allowed scientists to gain a better understanding of cancer, genetics, and other aspects of medical research, contributing immensely to the scientific community. However, neither she nor her family were ever compensated for the use of her cells.
In fact, her descendants continue to live in poverty with little access to health insurance, despite all Henrietta has contributed to science.
The continued use of Black people’s bodies to advance science while failing to support them has created a distrust between the black community and the scientific community. The failure to address disparities black people face because of the years of scientific neglect only further serves to hurt the black community.
This injustice continues to manifest in the way African countries are targeted for developmental research (such as vaccines), how black people are maltreated in hospitals, and how misrepresentative research causes the disproportionate socioeconomic factors found to negatively affect black people today. Black people are less likely to participate in clinical trials and are underrepresented in genome wide association studies which result in reduced efficacy of treatments when used in the black population. The black maternal death rate is three times that of white counterparts due to the same biases that J. Marion Sims based his surgeries on. These injustices seemed to have happened long ago, but they still remain ingrained in science, medicine and health today.
As the Covid-19 pandemic continues to disproportionately affect black and brown communities, it is likely that clinical trials for treatments will have fewer black participants due to the fear of being subject to malpractice, as shown by the examples mentioned. It is important for the science community to build back trust with the black community. It is imperative that we, the next generation of scientists, doctors, and professionals in the field of science understand how our research impacts people and that we properly strive to ensure equality. As we look back on history and see how the scientific community committed inhumane, racist acts on black people for the advancement of science, we challenge you to do better and make it your mission to be the change. Science requires accountability, and as a generation with better insight, we can hold those who contribute to bad science accountable. We have the power to mend this relationship and ensure that injustice has no place in science.
We want to leave you all with an important quote from Jurassic Park: “Scientists were so preoccupied with whether or not they could, they didn’t stop to think if they should.”