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Immortal Cells, Enduring Issues
June 2, 2010  |  by Dale Keiger

(page 4 of 5)

Geneticists are excited by the prospect of new research made possible by linking genetic samples in these biobanks to clinical information contained in digitized medical records. This raises new privacy concerns. Some laboratories and biobanks have procedures that strip the identifiers from specimens, so that no one knows from whom they came. But linking those samples to the information contained in medical records databases, while scientifically useful, may erode some of the privacy safeguards that depend on biospecimens being truly anonymized. Ford recalls a researcher in Arizona who did an experiment on a 1,000-person public biodatabase that included genetic and clinical data on each person. “It was said to be de-identified,” Ford says—all identifiers stripped out. “That means it did not have to be approved by a review board and anybody could access it—detective, lawyer, whatever, OK?” The researcher took 50 entries selected at random and by cross-referencing the data with other public information was able to match a person’s name to 47 out of 50.

Medical and genetic records have long lives. Henrietta Lacks’ medical records were made public again as recently as September 2009 by the authors of an article that appeared in Archives of Pathology and Laboratory Medicine. One of those authors was Grover Hutchins, a professor of pathology at the School of Medicine.

AS GENETIC MEDICINE, genomic science, and bioengineering become bigger fields, they generate more opportunities for profit by commercial enterprises. The public understands that human biospecimens may be used by scientists purely for the advancement of knowledge and the development of new medical therapies, but they’re also used by business to generate profits; through technology transfer, they have the potential to generate profits for universities as well. Few reviews of The Immortal Life of Henrietta Lacks or stories about its author have failed to mention that while Johns Hopkins has never sold, licensed, or patented HeLa cells, a number of commercial firms have sold them and continue to do so, and none of the proceeds have ever gone to Henrietta’s descendants. There seems to be no precise accounting of how much money has been made from HeLa; the near-meaningless figure of “multi-millions” has been in circulation since publication of Skloot’s book. But the amount is assumed to be substantial. In the afterword, Skloot writes, “Today, tissue-supply companies range from small private businesses to huge corporations, like Ardais, which pays the Beth Israel Deaconess Medical Center, Duke University Medical Center, and many others an undisclosed amount of money for exclusive access to tissues collected from their patients.” Meanwhile, the public asks: If a corporation used my tissue sample—a piece of my body—to develop a product that now generates profits, why am I not entitled to a share of those profits?

Ethicists speak of a “common good model” in which tissue donors are not compensated because they donated pieces of themselves not in the hope of a future payday but to further science that contributes to the common good. In this model, the payoff is not in dollars but in better medicine that someday might cure your disease or repair your injury. All well and good, but two factors complicate the situation. The first is articulated by Faden: “The hitch with this vision, which ethically has so much to commend it, is the suppressed moral premise that everyone will benefit from the advances that will result from this shared agreement to let our biospecimens be used for science,” says Faden. “This vision of the shared public good presupposes that all of us really benefit, with the emphasis on all of us. So in the absence of guaranteed access to a decent level of medical care, the moral justification for that structure breaks down.” She adds, “One of the really tragic dimensions of the Lacks story is the fact that her children still experience enormous difficulty getting access to decent medical care.” Says Skloot, “The truth is, not everyone does benefit. The people who benefit are people with money. The people it doesn’t help are people like the Lackses, people who do not have money, minorities. People who historically have been hurt most by research done without their consent tend to be the ones who do not benefit.”

Second, a biotechnology company or pharmaceutical company does not operate for the common good; it operates to enrich its investors. That suggests a different equation. If your labor as an employee contributes to the company’s success, that company owes you a salary. Why doesn’t the company owe you if it developed a lucrative product from a piece of your body? And regardless of its contributions to the common good, were a nonprofit medical center to generate revenue from selling your cells to a corporation like Ardais, wouldn’t you be entitled to a share?

Researchers and ethicists understand the sentiment behind these questions, but they point out several complications. Ethicists warn of the commodification of human tissue and the dangers of creating a market for body parts, even the tiniest of body parts. Researchers note that Henrietta Lacks’ story—a scientific breakthrough of immense importance that derived from the cells of a single person—is extraordinarily rare. Most often, advances in biomedical research involve hundreds if not tens of thousands of biospecimens, many of which may have been collected five, seven, 10 years ago. (Almost 60 years ago if they’re HeLa.) How does a research center or a for-profit company track down all of those donors to pay a royalty or fee? Says Nichols, the Hopkins vice dean for education, “You can imagine a world in which the retrospective reporting and notification requirements become so onerous that one is not able to do science at all, and the potential benefits from discovery are withheld from future patients because science is forced to grind to a halt. On the other hand, patients have rights that have to be respected, particularly if there’s commercial value.” If the alternative is to pay for tissue samples at the time they are taken, in case someone might gain commercially from them in the future, will nonprofit research centers be able to afford large-scale studies? The public wants its privacy guaranteed. How do researchers or companies know whom to pay retroactively if identifiers have been stripped from every specimen used in their research? As yet no one knows the answers to these questions. One solution, says Dang, is for consent forms to include a waiver of rights to any financial benefits.


47 Comments


  1. Thanks for this thought-provoking piece. And bravo to you and to Hopkins for taking on something that is/could be so thorny for the institution.

  2. This is a fascinating tale, both heartlifting in the good done to mnedical science and shaming in its account of the treatment of the family of Henrietta Lack. I should have liked to learn one thing though: in what way are Johns hopkins university now supporting Henrietta Lack’s family?

    • They aren’t. That is why this has turned into such a debate of ethics. The majority of the public feels that each person should be compensated for their contribution to the medical field, especially if their cells, tissues, information, etc. have made the industry millions or even billions of dollars. Still, uninformed “donors” receive no pay. That is because many “donors” do not know (were not informed by their doctors) that their bodies are being utilized by science. Case and point, Henrietta Lacks. This is the essentially the debate: What is the greater good? Paying the public for their contributions to the advancement of medicine and science, or continuing to take samples from patients without asking as to not risk a patient saying “no,” thus preventing such medical advances to occur.

  3. I just finished “The Immortal Life of Henrietta Lacks” and was fascinated by the entire story. Her cells have helped medical science “push the envelope” and discover so many cures. How one woman’s contribution of cells over 60 years ago (be it non-voluntary) still exists today is mind boggling. However, it is disheartening to know that although Henrietta’s contribution to science has been paramount, her family still is unable to pay for medical attention. I hope that John Hopkins will “step up to the plate” and do the right thing by them. Thank you Rebecca for writing such a wonderful book!

    • Her family is getting the education and dental work, as well as their truck fixed due to the funds from the Henrietta Lacks Foundation set up by Rebecca Skloot’s royalities from her book.

      • Sue, the education, dental work and a fixed truck is NO comparison/adequate means of compensation for their family’s contribution to the medical community and patients around the globe. At the VERY LEAST, JHU can provide her children with comprehensive medical benefits for the duration of their lives…? Just a thought…

  4. This article nicely describes and discusses issues related to access of personal information from medical records, use of tissue samples, informed consent, etc. These are issues that are raised, debated, and are of cocnern to many hospital administrators and IRB/EC.

  5. Johns Hopkins should consider providing free health care to Henrietta’s descendents as a way of appreciateion of the use and distribution of her cells.

  6. I agree. I just finished the book and Hopkins should offer the family descendents free medical service for their lives to make up for the way Henrietta and her family were treated and suffered for 60 years.

  7. How can Johns Hopkins not give the family their due and provide them with free medical care? What is the point of this article other than telling us what we already read in the book? If Johns Hopkins does not provide the care the Lacks family deserves they are adding to the injustice immeasurably.

  8. Suggesting that this family be the exception to the great American way is facile.

    If the Johns Hopkins owes free health care to this family, why not every family from every patient who might have donated some piece of themselves that may have contributed in some way to something beneficial? How would Hopkins and all the other hospitals afford to stay open?

    Perhaps the market driven system should not apply to ensuring citizens have adequate healthcare. Why should doctors and pharma companies get rich while most of the population cannot afford good health?

    • Henrietta Lacks’s children and descendants had their blood and tissue samples taken with no knowledge as to why this was being done. This was not done “for the greater good.” That expression covers a world of bad behavior. Deborah (daughter) thought she was being tested for cancer, and when she called to find out the results of the cancer test, no one knew what she was talking about.

      The case of Henrietta Lacks involves an extreme violation of privacy (“HeLa”); lack of any kind of consent, particularly when talking ‘over the heads’ of the participants. The idea that a college education would have helped in comprehension is erroneous. A science background would have helped, for instance, not a BA or MA in Creative Writing.

      Realistically, the family was lied to. Legally, when Henrietta’s cells were removed and place in the petri dish, they were no longer her cells, according to the California Supreme Court, which ruled on a similar case in about 1986 (John Moore and the “Mo” cells).

      No, donors like myself do not need to be compensated for the use of our cells. People like the descendants of Henrietta do need a modicum of respect shown to them because their cells were used also. Medical care is a small drop in the financial bucket for this family. We know who HeLa belonged to; you do not know who I am or which cells are mine. There is a universe dividing the two.

  9. Ethics/genetics

    What was the first word?

  10. I seldom leave a response, but i did some searching and wound
    up here Henrietta Lacks: her cells – and ethical issues – live on
    | Johns Hopkins Magazine. And I do have a few questions for you if you usually do not mind.
    Could it be just me or does it look like some of the comments appear like left by brain dead
    folks? 😛 And, if you are posting on other places, I’d like to keep up with anything fresh you have to post. Would you list of all of your social pages like your twitter feed, Facebook page or linkedin profile?

  11. My heart aches for Ms. Henrietta Lacks’ family on many levels. It is my hopes that John Hopkins and all those who have profited from Ms Lacks’ cell will compensate her family: at least that will ease the pain for the family of the unethical treatment of their mother. It is one thing to be an organ donor by choice, but to take a part of one’s body and give it immortality, while the body itself is dead is what horror movies are made of.

  12. I agree with so many others here who have stated that at the very Least JHU should be providing free health & dental care to Henrietta’s children, and I’ll add grandchildren. In addition to that some kind of compensation is in order. Adding to that, how do you put a dollar value on so many things in research that were ground-breaking firsts that have saved so many lives ?….None of them possible without Henrietta’s cells. I just don’t have any words for the injustice done to her family. A large part of that being repeated omission which is often considered as grave as Lying. For them not to know anything at all for over 20 years is unconscionable, and then still not told about All of the intent of taking samples from the family.
    God bless Skloot for starting the Henrietta Lacks Foundation that offers some relief for the family from the book’s royalties.

  13. Nursing Student

    I am sorry, but your article is not telling us anything that we don’t already know. The bottom line is that this man, did not get consent when taking these cells and using them for his research. Furthermore, patient care is not just about the patient, it is about the family as well. The fact that family did not know anything about the cells as soon as Grey realized the potential of these cells is not ethical in any form or fashion. I get it that there are some things a healthcare provider may not want to tell due to the potential of more harm being done than good. However, I just do not feel that this one of those cases. The family should have been notified from day one, and the idea of asking her family members to come in because they want to test them for ‘cancer’?? How do you justify something like that?? You cant!!

    I will end this by saying, If Henrietta was your mom, and this was your family how would you feel?

  14. read the book three times

    It’s called Democracy – Hypocrisy – Capitalism.

    To understand everything what was going on in 50s-80s, and the whole Henrietta’s story and all who was involved, needs to read Skloot’s book more than one time. I read it already 3 times. I did research on scientific studies of those days, detailed personal stories about Skloot’s characters (that are not in the book). When I read the book for the first time, I had only strong emotions without a single rational opinion that should be based on facts and research. Also, thanks to the HeLa I have hope for my treatment. I am very thankful to her for that!

    The illusion that people embrace themselves about pure democracy, privacy, and ethics get them in trouble; emotional trouble I mean. Where there is Capitalism – there will never be an intention that are for pure humanity sake. (Study economics) Especially these days. Sadly, people put money higher than anything else (I am not criticizing), because the society dictates that. This is how we live these days.

    People look at “privacy” and “ethics” as from (their own) individual perspectives. However, those “bad guys” who are making all those line cells happened, drugs, treatments etc. AND money are individuals too, who want their rights and privacy protected the way they want — democracy is very interesting tool. I am not justifying their actions, just trying to make a point of the democracy.

    Perhaps, it wouldn’t hurt much to give even at least a 5% to those, whose cells helped in scientific research (out of the $$ billion dollar profit); though, multiply all those numbers that have to be given away, will there be much left for the researches and spending. We do not know the industry. We cannot judge; at least I am not qualified to answer this question. As this is all private organizations, who do not have much government investments, meaning from citizens – they do the way they think it is right for them. (again, think from the other side perspectives). Perhaps there are other ways to appreciate patients.

    It would be nice if Hopkins would give the whole Lacks family a free medical treatment, as a “Big Thank You”. And I believe they would do so… However, Hopkins didn’t really profited from the HeLa – they gave away cells and have no legal rights to profit from the HeLa cells. That means, if they are going to give such present to the whole Lacks family, all those expenses have to come out from the rest of the Hopkins patients. Do you think every patient will agree with that? Do you think there wont be a single person who will claim the same right, because his/her cells were used in scientific way?

    It is very complex situation. We would think the solution is very simple. However, with the complexity of our country governing regime (not a critic), regulations, and law – it is not easy.

    We often hear: “It is just a business, nothing personal”, “Everyone survives as he/she can”. “Everybody wants to be rich.” (personally, I don’t. I want to have enough). These are practical things, not a myth.

    And again, this is just my opinion. I went through tragedies, that I thought would brake me for good. I lost loved ones because of the medical mistakes and justice wasn’t on my or my family’s side. I have learned to see things different and make rational choices. We are all making choices and live with them.

    I have a question to all who posted here. Did you donate to the Lacks Family Foundation? Because I would hear responses like: “I am barely getting by myself. Let’s those doctors and scientists pay – they owe the family.” etc.

    We all can judge, but to have a justified opinion is something different.

Trackbacks

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