Good afternoon. Michael and I would like to wish you health, happiness, and world peace for the rest of 2011. We would like to use this opportunity to thank President Scott, the Wheelock College board and officials, and the Wheelock College staff and students for inviting us to this “day of honor” for your august institution.
The incoming class was asked to read Rebecca Skloot’s book titled, The Immortal Life of Henrietta Lacks, over the summer. Our assignment today is to shed light on this powerful story—and relate its message to Wheelock College.
When Lucy Wheelock founded this institution in 1888—and I quote:
The goal...[was] nothing less than the redemption of the world through the better education of those who are to shape it and make it. Lucy Wheelock, 1914
As if following the admonition “the darkness is light enough” alluded to multiple times in the Bible (e.g., Genesis through Revelations), in the works of historian Lerone Bennett, and English dramatist Christopher Fry—Lucy Wheelock strove to use childhood education and improvement of the parenting families that nurtured them to shed light onto the rest of the world.
Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, continues that tradition. The book accomplishes this by disseminating knowledge to the general public about both the magnificence and dark underbelly of the United States’s health system. It speaks non-judgementally of breaches in medical ethics, unethical experimentation, exploitation, scientific racism, institutional racism, and more; alongside major and enlightening advances in the march of scientific discovery.
Perhaps more importantly is the book’s “wake-up call” about a major component of our society—serving as an exposé of the United States’ health system and its medical-social culture. Though not a focus of Skloot’s inquiry, medical professionals and the medical-industrial complex are exposed as having forgotten that medicine, health, health care, and health services are one of the eight (8) major components of the United States’ social system. The eight (8) components are: (1) education, (2) the economy, (3) the law, (4) government, (5) the environment, (6) culture, (7) the population, and (8) medicine, health, health care, and health services delivery system. Provision of health care is thus a social function and process—linking it directly to Wheelock College’s goal.
Skloot weaves a fantastic, scientific tale of “immortality” and “living forever”—popular myths which gain and hold the public’s attention. She masterfully describes the complex science undergirding this popular fantasy—and her treatment is spellbinding. But we are not here to console by focusing in order to obscure. In our analysis this remarkable tale will be spun in the gritty, historically flawed, and increasingly dark, compromised, and threatening world that is the contemporary United States.
Skloot’s book epitomizes both a “scientific windfall” and a detached representation of a human tragedy. In 1951 there was only one place in world one could find HeLa cells—on the cervix of Mrs. Henrietta Lacks. Because of her symptoms she was seen by a physician at Johns Hopkins University Hospital in the racially segregated clinic designated for indigent, “free,” or “charity,”* “colored” patients. A random biopsy of her cervix, the mouth of the womb, was taken without her consent. It contained cells which possessed a survival vigor far surpassing that of any human cells known to man then...or now.
How these cells were immediately grown in tissue culture, multiplied, were utilized, perpetuated, and then marketed by Johns Hopkins University, producing the foundation for today’s scientific breakthroughs in cell biology, oncology, immunology, cloning research, polio research, biochemistry, transplant research, in-vitro-fertilization research, virology, and space-medicine research, and more is a wondrous and awe-inspiring tale. Skloot renders a practical demonstration and popular educational tool revealing the power of American science.
On the backside, it also reveals a 392 year-old health system and health cultural dilemma ominously afflicting the United States’ health system. If one looked into any biomedical research or clinical sciences laboratory today they would likely find HeLa cells. Most biomedical or clinical researchers have used HeLa cells, but the overwhelming majority of these researchers have no clue of where the cells came from or the fact that Mrs. Lacks, nor her family, consented for her cells to be used in any way. That included me. I did not know the origin of the HeLa cell which I had been using in my own laboratory for at least two years until after I met my husband Dr. Byrd.
The story of Mrs. Henrietta Lacks is very personal to me for four reasons; although there are many parallels, our life trajectories are paradoxically and dramatically different. Striking similarities abound:
(1) first, Mrs. Lacks was a Black woman and so am I;
(2) second, Mrs. Lacks was a poor tobacco farmer and I was born and raised on a farm in North Carolina where tobacco was one of our main crops; my parents were land owners and not considered poor by any societal standards—Black or White but the fact remains, though we were not share croppers, I was born and raised on a tobacco farm;
(3) third, at age 24 I was diagnosed with a very early stage cervical cancer for which I was treated and cured. I am now a 38 year survivor. Unlike Mrs. Lacks, I had a very skilled, competent, compassionate, and empathetic Black doctor who treated me with dignity and respect and obtained informed consent during every step of my treatment and recovery;
(4) fourth and finally, it was the HeLa cell, the acronym coined for Henrietta Lacks’ “immortal” cervical cancer cell line, that changed my medical career and scientific life—and led to my commitment to the work that my husband, Dr. Byrd and I, do to improve the health and well-being of Black and other disadvantaged populations.
I met my husband seventeen (17) years into my 37-year long medical professional career. One Friday in 1988 after 10 hours performing exhausting radical pelvic surgery for my cancer patients, I met Dr. Byrd and two other medical faculty colleagues for delicious catfish dinners at the hospital cafeteria before making evening rounds with our residents. Dr. Byrd and I still had on our operating scrub suits, and I pulled a vial with tissue floating in preservative out of my pocket and placed it on the dinner tray alongside my meal. Dr. Byrd looked at me in astonishment and asked, “What is that on your tray?” I energetically said, “These are just cancer cells that I contained consent from my patient to test against the HeLa cell to determine which chemotherapy would work best to cure her cancer.” He then asked, “Do you know what HeLa cells are?” I replied, “Of course, they are the strongest cell line on earth and can help us decide what will be the best treatment for our patient.” Then he boldly asked me, “What does the acronym HeLa stand for?” I was stumped and bewildered and said “I don’t know.” He looked me dead in the eye and said “It stands for Henrietta Lacks.” He told me the story that you now know. Dr. Byrd then shocked me and pierced my soul when he said, “Dr.Clayton, you are part of the problem. You are just like those White doctors who exploited your Black sister.” I was mortified, because Dr. Byrd was implicitly saying to me that I, too, in perpetuating this travesty; was breaching medical-ethical codes and boundaries in the doctor-patientrelationship. In other words he was saying that if the physicians at Johns Hopkins did not have her consent, then neither did I.
I stopped the study, returned the HeLa cells and the multi-million dollar grant to the National Institutes of Health and continued my research in other areas. As I conclude, I can boldly say that while Mrs. Lacks did not give consent and was the victim of unethical experimentation her beneficence to the world is unimaginable and she will live in the annals of scientific discovery throughout eternity.
Dr. Byrd will now examine the dark corners of the health system revealed in Skloots almost magical narrative; and place it in the context of the U.S. social system and it’s dark contemporary problems. Extending the talk’s allegorical allusion to the mythical and religious concepts of “dark” and “light,” he will then reveal the potential roleyou...the hope of our future...and Wheelock College, must play in illuminating and correcting these dark systemic defects.
Thank you. As Dr. Clayton has so eloquently revealed—based on our examination of Skloot’s book—race, class, and ethnicity remain major problems in American health. And race continues its nearly four century-old history as the most significant variable predicting poor health and poor health outcome in the United States.
Mrs. Henrietta Lacks joins the Tuskegee Experiment victims as a metaphor for medical, ethical, and scientific abuse that has plagued, and continues to plague, the U.S. health system. How and why did this happen? Let us look a little deeper into the problem—as any good student should.
No permission for the biopsy was obtained from Mrs. Henrietta Lacks or her family. The billions of dollars earned from the use of Mrs. Lacks’ cells, later called HeLa cells, in the world’s scientific research laboratories, has never benefitted Mrs. Lacks nor her family. Based on the book, most of Henrietta’s relatives either possess no health insurance or are relegated to welfare or public aid for health care. Despite this grim record—much of it based on a defective U.S. medical-social culture, health system customs and processes, health financing flaws, and structural inequalities—Johns Hopkins University has never formally apologized to Mrs. Henrietta Lacks’ family for these abuses.
In a detached, distant, and almost clinical manner, Ms. Skloot inadvertently and almost accidentally describes the race-, class-, and ethnically-segregated and inferior health sub-system Blacks and the poor have endured in America for the last four centuries. As she weaves her tale, the loose network of public hospitals, charity clinics, segregated state hospitals, segregated asylums, and, most recently, emergency rooms (ERs)—all residua of the 400 year-old English poor-house health system and the legacy and effects of 246 years of a “Slave Health Sub-System”—is described in terms of a post-World War II America. She also describes its modern configuration in the 21 century—constantly in the throes of superficial and inadequate reform—alluding to it as a back-drop for describing the struggles of Mrs. Henrietta Lacks’ family—a family struggling against generations of poverty, segregation, discrimination, under-education, poor housing, incarceration, and unemployment. For them the health system is just another barrier blotting out the American dream.
All are made aware—a first time awakening for many Americans—that care for African Americans and the poor in Mrs. Lacks’ time was episodic, segregated, discriminatory, blatantly inferior, hugely expensive, of variable quality, and often unavailable. They also find out...for Henrietta’s family, and many African Americans today, the experiences are similar.
As the health care “safety-net” institutions decompensate—having been under open assault by “Market-based health care” since the Reagan-Bush era starting in 1981—care at the lower tiers of our health system resembles a “nether world” rather than a modern, Western, health care entity.
Ms. Skloot implicitly reveals that even African Americans who have struggled and achieved middle-class status—this is now African America’s largest group—do not receive equitable nor equal health care. Their disparate health status and outcomes revealed by the Institute of Medicine study, Unequal Treatment, reflects these realities. The IOM study uses hundreds of scientific articles to document that racial and ethnic minorities tend to receive a lower quality of healthcare than non-minorities, even when access-related factors, such as patients’ insurance status and income, are controlled. This helps explain the halting and unsteady march toward justice and equity in health and health care in this country. Race-based health and health care disparities have failed to improve since the end of the “Civil Rights Era in Health Care” ending in 1975. What life lessons should we take away from this experience?
This Convocation Day, focusing our attention on a single social structure—medicine, health, and the health care delivery and services system—should remind us that there is no greater time to reap the benefits of Wheelock College. Had he lived, Dr. Martin Luther King Jr. would have said, “In the health system, its midnight!” Thus, if a school whose mission is “To improve the lives of children and families” did not exist today in 2011—we would have to invent Wheelock College.
Let the examination of The Immortal Life of Henrietta Lacks be a watershed instructional moment. For it represents a challenge for Wheelock College to become more actively engaged in the disciplines of medical sociology and public health. The health system has forgotten that it is part of the social system—and the Nation’s health system needs your light and is suffering from your absence.
We are depending on you—our next college-trained generation—to solve this disaster we have created. Our ancestors and the people in power today have not performed well enough—its up to you to reaffirm Lucy Wheelock’s admonitions. The darkness is light enough.
All around, you hear the dark thunder-claps of Wall Street collapse, political deadlock and malaise, cultural anomie, and health system failure all threatening to collapse the entire social system. Having forgotten its role as a component of the United States’ social system, today’s “medical-industrial complex” indeed helps compound the darkness generated by our Nation’s web of interlocked social crises. Dark tentacles of these crises have affected every major social structure in our nation—including education. This implosion threatens not only the survival of our country, but Western civilization itself. If this comes to pass, lights will go out all over the country...if not the world.
Lucy Wheelock created an institution that creates educators, social scientists, and professionals that have worked wondrous feats in education, the social sciences, and social services. In this bleak environment of impending crisis on many levels, Wheelock College’s experience also tells us....
The darkness of the doldrums of our health system is the light.
The darkness of Henrietta Lacks’ experience is the light. The darkness of our culture’s anomie, political ineptitude, economic collapse, and military stalemate, that you face is the light
The darkness of the health crisis-challenge you face is the light.
The darkness of your way carries anyone to safety who dares to follow the light reflected by their own and our Nation’s, needs, experiences, and training.
The darkness is light enough.
Because of its past, because of the experience it has accumulated, the miracles it has created, and because of the promise of its future, Wheelock College stands at a strategically privileged point for creatively responding to the educational, medical-social, and social crises which are tearing this country apart.
The darkness is light enough. As my 100 year-old great-grandmother, a former slave, would ask me....
Young people! What ya’ll gon do?
Young people! What ya’ll gon do?
In America the youth of each generation gets tagged with a label. The flood of babies born after World War II were the “babyboomers,” later came the “hippies” of the sixties, the “yuppies” of the eighties, and “generation X” of the nineties. Some people in the New York Times and Oliver Stone’s movie Wall Street try to tell you that you and your peers are the “Ninja generation”—meaning no incomes, no jobs, no assets. Dr. Clayton and I shout to the rooftops that this is not so! As we witness you young people reaching out across the abyss of generations to hold hands in common cause with your ancestors trying to solve this nation’s problems—we look upon you, and we become energized. For you’re not any “Ninja generation,” you...are our saviors and our hope.
There have been at least five other dark, apocalyptic periods threatening the survival of our country: (1) the 16th century “Lost Colony” at Roanoke Island at what is now North Carolina; (2) the Revolutionary War; (3) the War of 1812; (4) the Civil War; and, (5) the Great Depression followed by World War II. Young people then took on the mantle of leadership, shed their “light” on the problems—and set the nation back on course.
[But] This is the time to move. You are called upon to take the lead in recasting the values of this deteriorating and decaying civilization. Even Jacques Barzun in his brilliant book From Dawn to Decadence forecasts hope saying, “it is plain that the...[common people’s] culture in decadence...[does] not suffer from inertia. It...[is] active in proportion to its predicaments...paralysis in one domain—and incompetence in many...—[and all of these excite] lively efforts to overcome them.”
Lucy Wheelock would have joined him along with other educational icons of her generation such as John Hope (1868-1936, first Black President of Morehouse College), Mordecei Johnson (1890-1976, first Black President of Howard University), Howard Thurman (1900-1981, Professor of Spiritual Resources and Disciplines, Dean of Marsh Chapel at Boston University), and Benjamin Elijah Mays (1894-1984, elevator and rescuer both as Dean of Howard University’s School of Religion, 1934-1940, and as President of Morehouse College, 1940-1967) who posed the question—what is the purpose of education? Lucy Wheelock knewwhat education, if it is real education, isabout—liberation of the individual and uplift of the entire community and society. She, along with these other leaders, would not believe it was safe nor honorable to educate men and women just for private profit. For them:
Education is liberation through teaching and uplift of the community. Education is a preparation for and an initiation into a life of service to the community. Education is organic in the sense that it must grow out of and feed back into the deepest currents and deepest needs of the community.
Lucy Wheelock, and others who emulated her, worked on the frontiers of the educational dilemmas of this country. As John Hope, a long-dead Morehouse College president and philosopher said many years ago:
This is not the time of the catfish— This is the time of the whale. This is the time to go for broke... The time to redefine the “mainstream” from your stream... The time for...[Wheelock College] to possess this land, Heed the challenge...[Lucy Wheelock] issued... years ago. Rise, [brothers and sisters].... Come...let us possess this land!
If this task is not carried out by Wheelock and other similar educational institutions, it will not be carried out at all. Perhaps, the Nation’s wealthy elite educational institutions, preoccupied with increasing their endowments, getting grants, and courting political favor are no longer good enough.
As you brighten the darkness of the world that you inherit and ponder what your mission is, remember the words of this old 100 hymn:
A charge to keep I have, A God to glorify, ...a never dying soul to save, and fit it for the sky. To serve this present age, My calling to fulfill, Oh God, all my powers engaged... To do my Master’s will... To serve this present age. [You can’t serve yesterday....and tomorrow’s not promised to you] Take up the challenge—don’t give up—Fight! Lucy Wheelock exhorts you [,we exhort you]—The darkness is light enough!
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* “Charity” or “free-care,” is actually a misnomer. In the United States since the days of slavery and the North American English colonies, slaves, Blacks, and the poor have been forced to barter their bodies for experimental, surgery-training, or research purposes to the “Mainstream” health system as “payment” for any so-called “free” care rendered. Tuskegee and Henrietta Lacks attest to this truth (Byrd WM, Clayton LA. An American Health Dilemma. 2000, 2002).