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Origin of HeLa cells continues to impact research ethics

Photo: Pablo Ramdohr, Some changes made, https://flic.kr/p/9fYG9F

The modern medical world owes a lot to HeLa cells: the polio vaccine, cancer treatments and in vitro fertilization, to name a few. It was the first immortal cell line, or group of tissue samples that could survive in a lab – and reproduce indefinitely. This characteristic made the cells ideal for research environments. HeLa cells became a catalyst for medical progress, from studying gene mapping to cancerous activity, and the cells remain in high demand today, even 60 years after the initial sample was collected.

Yet the source of those cells, Henrietta Lacks, never gave consent for her tissue samples to be used in research. And her family didn’t either.

Rebecca Skloot’s 2010 best-selling book, The Immortal Life of Henrietta Lacks, revealed the ethical dilemmas and complex social issues interlaced with HeLa cells and medical research more broadly: concerns of consent, privacy and compensation, among others.

Debra DeBruin, Ph.D., director of the University of Minnesota Center for Bioethics spoke with Health Talk about changes in medical research since Skloot’s book brought to life the human story behind the HeLa cells.

Health Talk: What are some of the ethical issues presented in the case of Henrietta Lacks?

DeBruin: Consent is surely one ethical issue; privacy is another. As Rebecca Skloot points out in the book, Ms. Lacks was publicly identified as the source of HeLa cells decades ago. Recently, researchers sequenced the genome of HeLa cells, published their results and posted them in a public database – this affects the privacy rights not only of Ms. Lacks but also of members of her family. In addition to being concerned about privacy and consent, we should also consider if people who provide tissues for research benefit in any way. Some of the real significant issues in this case relate to a lack of respect for Ms. Lacks and her family, as well as justice, race and social class. The HeLa cells were fueling modern medical innovations, yet the Lacks family didn’t have access to basic care back then. And they weren’t aware any of this was happening.

HT: Thinking about the book today, where has it made the most lasting impact?

DeBruin: Initially, taking samples from Ms. Lacks and using them for research without her consent didn’t violate any legal standards. But the rules have changed since then, and they are still changing. The National Institutes of Health recently modified requirements for consent for use of tissues and related medical data in research. Now, researchers must comply with a new policy that promotes sharing of genomic information in a way that protects privacy of people who donated samples for research. The policy also requires consent for future use of all tissues – even if the samples are de-identified, meaning without any personal information included. In addition to these legal considerations, the book did a lot to raise awareness about not only the scientific story about HeLa cells but also the ethical issues involved in the story. It was a very widely read book – it captured the attention of researchers, educators, students and the general public.

HT: Learning from the Lacks case, how can we engage in medical research ethically today?

DeBruin: One of the fundamental principles that should guide our work in clinical care and research is respect for persons. That means respecting the right for patients to make their own decisions about matters that affect their wellbeing. It also means respecting privacy wishes. Not everyone has the same attitude about medical records. Some people are more willing to share personal information than others, and that is a decision everyone can make for him or herself. We also need to be sure that people are protected from the potential risks research might pose.

HT: What can researchers or medical professionals take away from this story?

DeBruin: Researchers can take away an awareness of the impact that research can have on people. Rebecca Skloot does a great job of capturing different perspectives on the issues. Hearing a story like Henrietta Lacks’ takes us out of a purely scientific research perspective and shows us how research matters and affects people’s lives. You can step outside your own view and understand the issues in a more robust way.

The Lacks family will be speaking about informed consent and how HeLa cells have impacted their lives on Friday, November 14, at 9:45 a.m. in Northrop Auditorium. The event is free and open to the public. Details here

Comments
  1. February 20, 2016 4:29 pm | Larry Says:

    cool

  2. January 12, 2017 6:37 pm | Bailey Garber Says:

    Henrietta Lacks and her family never gave anyone permission to take her cell sample. Even though lots of important discoveries came out of Ms. Lacks cells. It was wrong to make use of them without her permission, she has the right to privacy as we all do.

    • January 24, 2017 11:20 am | Aubrey Jones Says:

      I agree with you, however we would not know half of the information that we do today without her cells.

      • November 25, 2017 9:54 am | michelle Says:

        We would know the information as we do now with her consent as well. Chances are if told how remarkable her cells were she would have allowed them to be used in research. In my opinion the resulting knowledge that came from her cells would be no different now, what would be different would be the effects that all of this had on her family.

  3. January 13, 2017 3:37 pm | Emma Lovejoy Says:

    Ms. Lacks never gave the research team permission to use her DNA. Although when they took this sample it wasn’t wrong of them to use her cells, but things have changed. Even though we have used them to find modern medical innovations it still wasn’t the ethical thing to do. Therefore I do not agree with the fact that they used the samples and are continuing to use them without her consent.

    • January 24, 2017 11:21 am | Aubrey Jones Says:

      I agree, because she should’ve given consent first.

  4. January 14, 2017 3:56 pm | Spkr Says:

    Since they used her cancer cells, shouldn’t her family receive some financial compensation? Others have made millions off her cells. That’s stilling!

    • January 24, 2017 11:19 am | Aubrey Jones Says:

      I agree, because of the fact that she has helped us discover so much.

  5. January 20, 2017 11:04 am | avery garza Says:

    i agree that it was a good idea to take her cells because it could help out other people with there diseases and help prevent other people from dying like thousands but her parents should get at least something in return from doing that.

  6. January 24, 2017 11:16 am | Aubrey Jones Says:

    Although Henrietta didn’t give consent for the research team to use her cells, we would not know half of the information that we do today if it wasn’t for her.

  7. December 1, 2017 11:11 am | Joe Shmoe Says:

    People who CAN solve problems should be encouraged, not unnecessarily encumbered by consideration for people who can’t, yet will receive the benefit of the solutions. I do not fault the doctors who cultured her tissue at all for doing so. The doctors had a chance to uncover the inner workings of a dark and mysterious disease that even today ravages our society. Many thousands of future “Henriettas” will live a longer, more satisfying life due to their work.

    Some people are born into situations that facilitate learning and knowledge, while others are not. This may not be fair, but it is ultimately less fair – even destructive, possibly suicidal – to prevent those who “have” from using their gifts to benefit the rest of us.

    Whatever the future holds for medical ethics, let’s neither stop encouraging these important medical advances nor prevent a greater number of people from having access to them.