Weighing Rights and Responsibilities in Medical Research
By Charles Buchanan
Henrietta Lacks was not a doctor. She was a poor African-American tobacco farmer and housewife from Virginia. But she has helped heal untold numbers of people around the world. And she is playing a crucial role in the development of new treatments for everything from cancer and AIDS to genetic diseases.
Before Lacks died of cervical cancer in 1951, scientists at Baltimore’s Johns Hopkins University took some of her tumor cells and cultured them; to their surprise, those cells kept growing and dividing, becoming the world’s first immortal cell line, known as “HeLa.” They’re still growing today in laboratories around the world—including UAB—and nearly every biomedical scientist has worked with them. Researchers have swapped HeLa genes, pelted them with radiation and viruses, and launched them into space—studies that have led to the development of common medicines and major breakthroughs including the polio vaccine, in vitro fertilization, cloning, and gene mapping.
Lacks’s cells are one of the most important tools in biomedical science, but she never knew they were taken from her. The cells were removed without her consent, and her family wasn’t told about them for two decades. In the meantime, HeLa became part of a multimillion-dollar industry, yet none of her descendants received any profits; many still can’t afford health insurance. Lacks’s name and medical records also were released without permission, adding to the family’s confusion and mistrust.
“Everyone is supposed to benefit from research, but those who provide the samples often don’t benefit,” says Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, a recent bestseller about the woman behind the cells. In March, Skloot visited UAB as part of the Reynolds Historical Lecture series, drawing a standing-room-only crowd.
UAB philosophy professor Gregory Pence, Ph.D., lists the case’s key ethical issues as “confidentiality, informed consent, and the right to control the products of your body.” While informed consent—the process of providing information and receiving the patient’s permission—wasn’t common practice in 1951, “norms were certainly evolving about patient confidentiality,” Pence says.
More protections are in place today. A National Institutes of Health regulation makes informed consent standard procedure: No research proposal involving human subjects receives federal funding unless it’s approved by local ethics review boards. In 2006, Congress outlawed the release of personal medical information.
At UAB, the Institutional Review Boards for Human Use (IRB), two groups of 15 people, evaluate all prospective patient studies. Tim Townes, Ph.D., chair of the UAB Department of Biochemistry and Molecular Genetics, describes IRB members as a mix of university faculty and community representatives—everyone from scientists and philosophers to lawyers and clergy. They are “meticulous” in minimizing risks to research participants and ensuring that patients are fully informed about study requirements, he says. “Proposals never pass the first time—there are always questions for us to answer. And they almost never go through the second time.” The process “focuses everybody on the dignity of every patient.”
Townes recalls his first HeLa encounter, as a postdoctoral student in 1980. “If the genes we were studying worked in red blood cells and didn’t work in HeLa, then we could begin to define the parts responsible for the gene’s function in red blood cells.” He explains that it’s relatively easy to add DNA to HeLa cells—one reason they are so valuable to scientists. The cells also divide quickly, making them simple and inexpensive to grow.
HeLa continues to help UAB scientists make discoveries. Biochemist Hengbin Wang, Ph.D., recently extracted the proteins from 2,000 liters of HeLa cells he grew on campus. His goal was to find the mechanism that causes chromosomes to loosen and tighten, which in turn encourages and reduces gene expression. “From hundreds of thousands of proteins, he was able to purify one complex that opens and closes chromosomes,” Townes says. The finding could offer new insights on cancer treatment.
HeLa research also paved the way for Townes’s work with induced pluripotent stem (iPS) cells, which he calls a “reprogramming” of a patient’s own cells. “Patients will be able to go to the dermatologist, get a small biopsy of skin, and those cells will be grown in culture and converted into iPS cells. From those, we will be able to derive any of the 200 cell types in the body, which can be transplanted back into patients.” The cells also can be used to correct genetic defects that cause problems such as sickle-cell disease, a painful blood condition. In 2007, Townes and colleagues cured sickle cell in mice using iPS cells.
“A lot of medicine will move to individualized therapies,” Townes says. But before then, scientists must conduct clinical trials involving human patients—without repeating HeLa’s ethical mistakes. Currently, Townes is establishing informed consent for future sickle-cell research by sharing information with community foundations around Alabama.
One HeLa legacy remains contentious: control of patient tissue samples. Legal rulings state that once tissues are removed from your body—even during a routine blood test—you forfeit any claim to them. In the past, researchers using such tissues have made discoveries that have led to promising and profitable treatments, yet the original donors have received nothing.
Pence says that not compensating patients who provide tissues “is a little shortsighted.” If people had a financial incentive, “they might participate more” in biomedical research. “Not everyone’s cells are going to be valuable,” he adds. “But in the era of personalized genomic medicine, more medicines will be tailored to particular ethnic groups. If people don’t participate, scientists can’t develop treatments.”
Townes hopes that patients participating in research see the value of their contributions, whether or not they receive compensation. “Every piece of the puzzle is critical.” HeLa, he says, is a prime example: “In the end, a huge amount of knowledge has come from those tiny cells.”