PART III: "Clinical Trials: A Legacy of Shame and Fear Addressed in 2010"
The Bioethics Sins of a Nation Being Rectified
By Elaine Hegwood Bowen, NNPA Special Correspondent
September 12, 2010A Closer Look at Tuskegee, HeLa Cells, and the Black Community
| Some of the subjects of the Tuskegee Syphilis Study|
Mr. Pollard was referring to the early 1930’s, when he was a participant in the Tuskegee Study. He was also one of the last eight living participants when Pres. Bill Clinton apologized to the men at the White House in 1997, saying “they were denied help, and they were lied to by their Government.”
Unfortunately, in 2010 another medical injustice has been uncovered—the case of a Baltimore woman who died in 1951 nearly at the half-point mark of the noted Tuskegee Study.
Bioethics is basically the study of the ethical issues brought about by advances in medicine. As we explore these two bioethics episodes, it involves the lack of respect for persons and the absence of informed consent guidelines during research, we can learn much about their influence on the Black community and contemporary medical research.
The study of “bad blood” among Black men has been called the Tuskegee Study and also the Tuskegee Study of Untreated Syphilis in the Negro Male. People living in the Macon County area of Tuskegee, Alabama, reportedly are upset that the true name of the experiment—the U.S. Public Health Service (USPHS) Syphilis Study at Tuskegee —isn’t more easily recognized.
Folks in Tuskegee surmise that they didn’t do anything wrong when the “experiment” began in 1932. And many Black folks view the movie “Ms. Evers Boy”s with Olufunmilayo (Funmi) Olopade as merely entertainment. The USPHS Syphilis Study at Tuskegee was a study of the effects of untreated syphilis on Negro men. The public health service withheld treatment from men who had syphilis, leaving them sick and terminal, even though in the early 1940’s penicillin was developed as a safe and effective cure.
James H. Jones writes in “Bad Blood: The Tuskegee Syphilis Experiment”, “Like other white Americans of the 19th century, physicians were fascinated by the large number of ways in which Black people appeared to be different. Physicians were one of the first public groups to study Blacks in a systematic manner; because they belonged to a profession that claimed to possess scientific knowledge about human beings, and their views carried considerable weight.”
One foreman, writes Jones, ordered his employees to participate: “Tell these niggers the health doctor will be at the Possom Hollow School tonight. He’s got some government medicine to cure the [bad] blood disease. A lot of these niggers have got blood trouble, sickly, no count, lazy; but maybe it’s not their fault. This doctor will find out.”
Some reports say the study involved 632 Black men, of whom 399 had syphilis; the exact numbers of healthy or sick participants or those who died have never been confirmed. Conducted without patients’ informed consent, the study offered participants free medical exams, free meals and burial insurance. But the study didn’t offer vaccine for syphilis for those who had it, and this “research” continued for 40 years. In July 1972, after an Associated Press news article broke the story, the U.S. government deemed the study “ethically unjustified.”
Another book, The Tuskegee Syphilis Study, written by Fred D. Gray, says the study sought Black males in the second stage of syphilis, who were told they were receiving medication, even though they were not. Gray was also the attorney for the survivors who sued the doctors and the government, led by Pollard.
Tuskegee, Ala., the site of Tuskegee Institute [University], was the location of this awful experiment. Yet, the University now boasts of the nation’s first bioethics center—the Tuskegee University National Center for Bioethics in Research and Health Care.
These men and their descendants will be forever heralded for the wrong that was done to them. But, there is yet another case which is also egregious. A Black woman at Johns Hopkins Hospital in Baltimore was sacrificed in yet another medical “trial.”
Henrietta Lacks, a loving wife and poor mother of five, died in 1951 as doctors harvested cells from her body while supposedly treating her cervical cancer. They had found that Lacks’ cells were the first immortal human cell line that would keep growing and growing, according to journalist Rebecca Skloot in her recently published book, “The Immortal Life of Henrietta Lacks”.
Before that, researchers used laboratory-grown cells to test theories around disease prevention and treatment. These cells, called HeLa cells, reportedly have been cloned across the world in research vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the effects of the atom bomb; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.
Lacks' cells became among the most important tools in modern medicine. Yet her heirs lived in poverty as she remained unknown until this book was written.
Lacks’ husband, David, has been quoted as saying that he never gave permission for his wife’s cells to be used; nor for an autopsy to be performed, as he took her to the hospital daily for “treatment” at the Black ward at Johns Hopkins.
The missing links in both of these bioethics episodes are informed consent and the doctors’ duty to do no harm. Groundbreaking outreach now not only commits to ethical treatment, but racial inclusion.
Dr. Olufunmilayo (Funmi) Olopade, director of the Cancer Risk Clinic at the University of Chicago Medical Center, says her early breast cancer research once involved only Jewish women, but now it also involves women of African descent.
“I first started doing research in 1990, but a few years later, when I began focus groups with women of African descent on the South Side of Chicago, the women made it clear that they wanted to be treated like anyone else,” she says.
As a result, Dr. Olopade, who has been involved in about 10 groundbreaking breast cancer research projects, insists on providing the same access to Black women as she provides to others.
Furthermore, the National Institutes of Health (NIH) made it mandatory that the research reflects the community that it serves, Dr. Olopade added.
“We have to provide outreach to make sure it benefits everyone. If you have a university in a predominately White neighborhood, they study in their backyard, but we are able to highlight different types of breast cancer.”
Dr. Olopade is optimistic about contemporary research. “We have come a long way because of many things that have happened in the past. But now there are committees and safeguards to encourage research participation by everyone.”
Elaine Hegwood Bowen is a reporter for the Chicago and Gary Crusader Newspapers. "Clinical Trials: A Legacy of Shame and Fear Addressed in 2010" is a series resulting from a partnership between the University of Maryland Bioethics Research Center and the NNPA Foundation.