Tissue Rights and Ownership: Is a Cell Line a Research Tool or a Person?

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.

Legal Complications

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.

Looking Ahead

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.

About the Author

Claire Devine

Claire is a 2L at Columbia Law School.
  • Rita Vogel

    I appreciate scientific advancement, which I see as the pursuit of Truth. However, let us not omit respect for our humanity in applied science. I am an organ donor with interests in the potential of preserving or enhancing the life of another human being through the giving of my organs when I am no longer in need of them. However, I would not appreciate my cells being used as experimental springboards in cloning, or other such endeavors. In other words, I don’t want to do junior high again, either as myself, or a startling facsimile of me. Thus, I now feel compelled to review the conditions and the laws which govern organ donations. Can they be used for “science”? Is somebody going to grow me in a test tube so that only paying taxes, but not death, is a sure thing?
    In this case, I disagree with the California Supreme Court. It certainly suggests the wisdom in reading that fine print.

  • http://betterbio.wordpress.com/2011/05/17/why-betterbio-why-now-3/ Why BetterBio. Why now. « BetterBio

    [...] day. Farmers and seed companies are battling each other in the courts over intellectual property. Patients whose tissues are used in medical research are unable to realize the benefits of breakthroughs they helped to produce. Many, or most, of the [...]

  • Anonymous

    As technology advances so should the legality (aka informed consent). But even with informed consent, there is disagreement over what to include and exclude. However the technologies that have come out of human health have been good. Even now scientists know how to wash out the cellular data(dna)  of an organ and the cells themselves and leave the proteins that form the structure in tact. This in turn would theoretically reduce the likelihood of rejection because it would be the patients cells and DNA used and only the donors proteins (scaffolding/structure) to lay the cells on. Weird but cool.

  • Jenna Hojnacki

    I have just read The Immortal Life of Henrietta Lacks for my English II and Chemistry classes. The story is about the Lacks family and the science with the HeLa cells. When reading this the issue of tissue rights came up in the classes. I believe that the California Courts were wrong in going against John Moore since he did not have any information to what the doctor was doing.
    Informed consent has become a big issue. Also what entails informed consent is being put to question. Henrietta put forth consent for the surgery she had done to treat the cancer but it was not informative to the point where it told what else would be done to her and with her cells.  People should have the right to do what they wish with their tissue and not be left out of what  is a part of their body just because someone patented it like in Moore’s case.

  • http://betterbio.wordpress.com/2012/10/09/why-matt-volunteers-as-an-editor/ Why Matt Volunteers as an Editor | BetterBio

    [...] and seed companies are battling each other in the courts over intellectual property. Patients whose tissues are used in medical research are unable to realize the benefits of breakthroughs they helped to produce. Many, or most, of the [...]

  • http://jboden0408.wordpress.com/2013/10/18/introduction-part-2-hela-today-a-goldmine/ Introduction Part 2: HeLa Today: A Goldmine | Henrietta Lacks: An Expository Situation Dictated by 1950’s Attitudes

    [...] Ultimately, Moore found out that his cells were being sold and sued for profits. However, Moore lost the case (HeLa cells were referenced in the case as a situation where tissue was taken from a patient and money was made off them; yet, the family never sued for profits.) The court ruled that “a patient must have the ultimate power to control what becomes of his or her tissues” (Skloot, p. 205) however, “When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes” (Skloot, p. 205.)  Basically, doctors have to get permission to take the samples from you, but after the removal has occurred you have no say on what happens to your samples. Moore wasn’t awarded any of the profits from his cells. Now that this precedence has been set even if Henrietta’s family were to sue they likely would not receive profits either. For further information about the legal and ethical issues regarding HeLa and Mo see Tissue Rights and Ownership: Is a Cell Line a Research Tool or a Person? [...]

  • Jeff Holderness

    Good question. The Moore case addresses this. With all research using tissue samples, researchers (in the US at least) must first obtain a signed consent form. The organ donor consent doesn’t cover making cell lines. Here is the organ donor FAQ page: http://organdonor.gov/faqs.html

    Also, leukemia and other cancers are largely unique: most cells will not spontaneously grow in culture on their own. So, even if someone were illegally harvesting your body for tissues, they would have a very hard time growing your cells.

    Unless… it is conceivable that the recipient of your bone marrow could consent to scientific research, and donate a cell from you.

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