To doctors, the HeLa cell line is an invaluable tool in the treatment of disease; to the Lacks family, it is an invaluable piece of their mother. The HeLa cell line, the first “immortal” cell line, is the solution to overcoming many impediments in biomedical research, and a key tool in developing certain cures and drugs that have the potential to improve the lives of millions of people. That collection of cells derives from the now-deceased Henrietta Lacks, an African-American mother from Baltimore, Maryland, kept alive for decades without her children’s knowledge or permission. The shock and discomfort they felt upon learning of this, coupled with the lack of any disclosure, seeking of informed consent on the part of HeLa cell researchers, or share of the vast financial benefit that accrued to the physicians and researchers, serves as an emotional counterbalance to the utility these cells represent. Her cells’ story raises many difficult questions regarding ‘tissue rights,’ including questions about ownership rules, the role of informed consent, and the fair distribution of profit. Do patients still own tissue cells once they have been removed from their bodies? Do doctors have the duty to ensure their patients understand that these cells may be cultured and preserved, and to share any profits from selling the cells?
HeLa’s Immortal Cell Lines
The development of “immortal” cell lines led to major improvements in research and experimentation; unlike most cells, these cells do not die of old age. Immortal cell lines are significant because of their ability to grow indefinitely and to survive being divided and shared; these traits allow scientists to engage in more productive research. Scientists created the first immortal cell line, dubbed HeLa, almost 60 years ago, in the 1950s. Since then, scientists have used HeLa cells to develop the polio vaccine, as well as drugs that treat Parkinson’s disease and leukemia. Scientists even sent cells from the line into space to aid in research on the effects of zero gravity on human tissue. Overall, scientists have produced more than two thousand pounds of these cells, the sales of which have generated millions in profits.
The Personal Side to the Story
Recently, renewed interest in this cell line has focused on its origin rather than its results. In this case, scientists named HeLa cells after the patient in whom they first found them: Henrietta Lacks. Lacks suffered from a particularly virulent strain of cervical cancer and, after unsuccessful radium treatment, died in 1951 at Johns Hopkins Hospital, Maryland. Without Lacks’ knowledge or consent, her doctor shared a sample of her tumors with a researcher, Dr. George Gey, intent on developing an immortal cell line. With Lacks’ tumor cells, the researcher succeeded in making the line that led to medical advancements and high profits.
This behind-the-back cellular research and development story has recently become the subject of controversy. “Tissue rights” scholars now question whether or not patients should retain any control over cells removed from their body. Currently, cells be bought and sold without the patients’ permission, but tissue rights advocates suggest that these often-unwitting donors deserve a share in the profits their cells eventually reap.
Complicating the issue is the fact that some believe Henrietta Lacks’ story to primarily be a “case of a black woman whose body had been exploited by white scientists.” The contrast between her children and grandchildren’s continued poverty and the vast profits made from commercializing the HeLa cell line heightens the feeling that the scientists responsible cheated Lacks and her family. Also troubling is the fact that researchers continued to collect genetic material for the purposes of HeLa cell development from these family members long after Lacks died, under the guise of routine cancer screening diagnostics.
Given the current state of the law, the Henrietta Lackses of the world have a hard argument to make if they believe they deserve a share of the profits. In a similar case in the 1980s, researchers removed the spleen of John Moore as part of his leukemia treatment. Recognizing the unique scientific and financial potential of Moore’s particular cancerous cells, his doctor promptly developed a cell line from the extracted lymphocytes, patented the line, and licensed it for hundreds of thousands of dollars. The doctor also gathered samples of Moore’s blood and other tissue on future visits; he told Moore’s that his continued health depended upon such testing but did not reveal that he was keeping the samples to aid in his research. The resulting cell line, Mo, now has a market value of around $3 billion.
When Moore discovered these lucrative results he sued for his share of the profits. The California Supreme Court, however, rejected his suit, holding that Moore did not have a property interest in the cell line developed by his doctor and that his rights to privacy and dignity were sufficiently protected by the doctrine of informed consent. The court also pointed out that certain laws seem designed to prevent patients from retaining their organs after their removal. The court did concede, however, that the doctor’s financial motives should have been disclosed to Moore.
The current regime is one where tissue or cell samples removed from a person’s body are tissues or cell samples in which that person has no property rights. Today, patients who undergo surgery often sign forms that specify whether any removed tissue may be used for research purposes.
The nagging feeling that scientists and doctors treated Henrietta Lacks and John Moore unfairly remains. It can be unsettling to know that doctors have hundreds of thousands of dollars worth of incentives to operate on or take samples from their patients. Moreover, as Lacks’ family knows, once tissues have been excised from our bodies, the feeling that they are part of us can remain; the immortal HeLa cell line will always be Henrietta Lacks to her family.