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World Day of Social Justice 2019
To celebrate the 70th anniversary of the Universal Declaration of Human Rights (UDHR), proclaimed by the UN General Assembly on December 10, 1948, this year the Committee on Human Rights (CHR) will be sharing stories of scientists, engineers, and health professionals who have used their expertise to promote and protect human rights. Each month we will focus on a different right enshrined in the UDHR. To celebrate World Day of Social Justice, we are sharing the story of CHR member Vanessa Northington Gamble's efforts to promote the right to equality and non-discrimination, as former Chair of the Tuskegee Syphilis Study Legacy Committee.
"All are equal before the law and are entitled without any discrimination to equal protection of the law. All are entitled to equal protection against any discrimination in violation of this Declaration..."
-Article 7, Universal Declaration of Human Rights
Addressing Discrimination in Medicine
The U.S. Public Health Service Syphilis Study at Tuskegee (1932-1972) infamously highlights human rights violations and ethical failures in the context of biomedical research. During the study, designed to observe the effects of untreated syphilis and document racial differences in the disease, over 400 African American men with latent syphilis and approximately 200 controls were observed and monitored by federal government researchers. The researchers used incentives such as burial insurance, hot meals, and free medical examinations to recruit the men. They deceptively informed the participants with syphilis that they were being treated for the disease although this was not the case, even after penicillin became the treatment of choice in the 1940s. Dozens of individuals involved in the study died from syphilis or syphilis-related complications. Several passed the disease on to their spouses and children.
As Chair of the Tuskegee Syphilis Study Legacy Committee, Vanessa Northington Gamble was instrumental in securing a formal apology from the U.S. government for the decades-long non-therapeutic human experiment. In this apology, delivered to the surviving study participants and families of participants in May 1997, then-President Clinton acknowledged the government's ethical failures, saying, "I am sorry that your federal government orchestrated a study so clearly racist. That can never be allowed to happen again." The apology also included a commitment to establish a National Center for Bioethics in Research and Health Care at Tuskegee University. Officially opened in 1999, the Center explores issues related to research and treatment of African Americans and other underserved communities. From 2004 to 2007, Dr. Northington Gamble served as its director.
Dr. Northington Gamble’s continuing efforts to examine the legacy of the Tuskegee Study, including the Study’s implications for trust in health care providers by minority group members, are vital for researchers working to promote the rights of equality and non-discrimination enshrined in the UDHR.