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The Immortal Life of Henrietta Lacks: Inequity and Cervical Cancer

March 10, 2010

Henrietta Lacks, photo: Lacks family

I just finished The Immortal Life of Henrietta Lacks by Rebecca Skloot.  The book has been highly praised and rightly so.  Rebecca Skloot is a poised and passionate storyteller who doesn’t absent herself from that which she weaves, nor does she impose upon it.  The story is so compelling that she is at once invoked and dwarfed by it.

The book is about a woman who died of cervical cancer in 1951, and the cells taken, without consent, from her metastasized tumor, which became probably the most famous cells in the world.  They live on and multiply almost effortlessly, the first cell line to do so, thus enabling a myriad of scientific research.

While the world has heard about, and benefited exponentially from the cells, dubbed HeLa, the story of this woman has remained untold.  She is Henrietta Lacks, a poor African-American mother of four from Baltimore.

Henrietta is part of a community with little trust (for good reason) in, or familiarity with, the medical institution.  A snapshot of Henrietta’s medical history shows a lifetime of misdiagnosis, overlooked symptoms on the part of hasty doctors, refusal of treatment on her own part due to cost or time, or lack of health knowledge.

It seems that Lacks suffers less at the hands of racist doctors, though, than at the mercy of racist institutions, that simply don’t offer or prioritize the level of care and prevention that white folks might have enjoyed at the time, and simultaneously exploited the poverty and position of African-Americans to run undue tests and disregard common ethical courtesies.  Remember this is all happening simultaneously to the horrible Tuskegee Syphilis Experiments.

During her cervical cancer treatment, her cells are taken without her consent, and

HeLa cells, Olympus FluoView

then proliferate for decades without the knowledge or consent of her family … while HeLa cells jumpstart major medical breakthroughs and earn their proprietors millions, Henrietta’s husband and children struggle to make ends meet, and suffer with debilitating chronic illnesses.

Without any background knowledge of biology, when do they learn belatedly of their mother’s “contribution” to science, they understand her cells as a proxy for her and are traumatized by the descriptions of all the wild experiments being done on their mother. It is a startling look at inequities both in health literacy and health care access.

Since the time that Henrietta Lacks was diagnosed and eventually succumbed to cervical cancer, screening techniques have improved dramatically.  But access to screening and prevention continues to be riddled with inequity, both in the US and worldwide.

In the US, Black and Latina women have a much higher incidence than white women of cervical cancer, which is linked to strains 16 and 18 of the Human Papillomavirus (HPV).  Last year, a study in California found that African-American and Latina women received the HPV vaccine far less often than White women.  And that’s just one example of the inequalities; there are others.

But globally, the true burden of cervical cancer falls cruelly on women in the developing world, who account for 85% of all cervical cancer deaths.  Many developing countries do not have screening regimens in place, or if they do, it shouldn’t come as a surprise that the countries’ poorest women still won’t have access to these facilities, knowledge of cervical cancer screening, or the funds to access either.

Yet there is growing momentum to address the issue of cervical cancer and the inequity that plagues it, with the development of high technology, high usability screening options that can be used in low-resource settings, such as the new careHPV test – in development. Other more rudimentary methods of screening are also radically improving access to early detection and treatment for the world’s poorest women.

And even more amazing is that Henrietta’s cells, taken from cancerous tumor on her cervix, have helped advance the very genetic profiling technology that is now making breakthroughs in cervical cancer screening. Last year, a study showed that the HPV DNA test is more effective screening tool for cervical cancer than the Pap smear, by a long shot.

As awareness grows about the worldwide burden of cervical cancer, there is increased awareness about the links between HPV and a number of other cancers, including anal, throat, and penile, and even questions about whether men might also benefit from the new HPV vaccines on the market (Gardasil and Cervarix).

Needless to say, there has been a world of change in cervical cancer screening and prevention since Henrietta Lack first visited Johns Hopkins for an exam almost 50 years ago.  Yet the question nags in my mind as to whether her access to such measures, should she be alive today, would be any different.

Inequality in access should be continually on our minds as we pioneer these breakthroughs.  For, what good are technology and innovation if not to shatter the barriers to health care access?

  1. March 10, 2010 6:34 am

    A great piece on a fascinating, unbearably sad story. There was once a book about a young US female scientist who had been doing some pioneering work on DNA profiling when she was tragically murdered. Ironically, her field of work helped convict her killer. I can’t remember its name or author but if I do I’ll post it, because it was a fascinating, and moving read …

  2. amy permalink
    March 10, 2010 1:55 pm

    the issue of health care access is always a problem, and so relevant right now with the current federal health care reform debate.
    it is incredible that the legacy of one woman has contributed so much to medical innovation, but at the same time it is so tragic that her family and community are excluded from the benefits. It is great that the story is finally being told.
    Has there been a response from the researchers and medical institution that were responsible for replicating her cells?
    i look forward to reading this book myself. Great review! 🙂

  3. Julie Bartkiewicz permalink
    March 10, 2010 6:00 pm

    Im a bit on the fence with this.
    I personally have had non-HPV related cervical cancer and also have signed consent forms to use my cells and blood scanning for research. It is my personal belief that it is a human obligation to contribute to fighting diseases like Cancer when we have the means to.
    I along with thousands of other women and men have put our cells into this research without a penny in return. Sure everyone would like to get paid for their contributions but to me I am paid in ways other than monetary funds.

  4. Jessica Mack permalink*
    March 10, 2010 7:34 pm

    Julie, I agree that we should be giving with our cells, blood, etc. for the good of science… although when you have not been offered consent, and have been even taken advantage of, and kept in the dark, such as the Lacks family, I can understand the wish for at least some compensation or simple acknowledgement. Skloot mentions a few interesting court cases around cell/fluid donation that set the precedent, and most times you really can’t try and “own” your fluids once they’ve left your body. There are people, though, who have become wealthy entrepreneurs of their own cell lines. But the real rub with the Lacks family was never really the money, but the agency and respect they deserved but never got.

    Amy, to answer your question, I’m not sure what the reaction from researchers has been since the book was published, but Skloot mentions at least one really honorable researcher in the book who makes a huge effort to connect with Henrietta’s children, apologizing on behalf of his colleagues, and giving them a personal tour of the HeLa lab at Hopkins, where they get to see, for the first time, their mother’s cells under the microscope. It’s pretty awesome, sort of an aha moment where the Lacks kids appreciate the wondrous benefits of science and the scientists reveals a human vulnerability.

  5. Julie Bartkiewicz permalink
    March 12, 2010 3:43 pm

    Well this is also why I said I was on the fence with this issue.

    Im also fairly certain that hospitals still do use removed tissues for research even if it is as little as pathology reports.

    Im still not convinced that because the drug companies are making money they owe the cells former owner some sort of dollar amount.

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