Henrietta Lacks’ Legacy of Informed Consent

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informed consent and MS

A few months ago I had the honor of meeting David Lacks, a grandson of Henrietta Lacks. It was at a large meeting and not everyone in the room understood his link to our medical care; the people who already knew about grandmother had most probably read the book The Immortal Life of Henrietta Lacks.

If you have not read her story, I urge you to get a copy to better understand her role in modern medicine. I cannot write this without also noting the Henrietta’s race and economics status played a role in her treatment and a large piece of discussing her medical care centers on disparity of care; her treatment as a poor, African-American woman is central to her story.

David Lacks talked about the importance of informed consent and patient rights, and I want to share a bit of why Henrietta Lacks is important to biomedical research, and to you and me, as patients.

In the early 1950s, Henrietta Lacks became ill and went to Johns Hopkins Hospital for help with abdominal pain. After a few missteps, she was finally diagnosed with cervical cancer. During her care, her doctor removed a tissue sample of the cancerous tumor and also a sample of healthy tissue, and turned these over to George Otto Gey, a cancer doctor and researcher at Johns Hopkins.

Henrietta died, but not completely because those cells with her genetic code that Dr. Gey took to his lab without her knowledge turned out to be special, and he was able to get them to multiply and divide and provide more cells. Henrietta had these super cells that would reproduce rapidly, were well suited for research and were immortal cells. Dr. Gey’s team mass-produced cells for the first time ever and did it with the initial sample from Henrietta.

Henrietta’s cells were named following the usual procedure for using the first two letters of her first and last name and became known as the HeLa cells. Hela cells have been used in biomedical research around the world for over 60 years, with more than 20 tons of cells produced. There are more than 11,000 patented drug items that used her cells for research including the vaccine that helped to eradicate polio. HeLa cells are used in multiple sclerosis research and when I Google search for “multiple sclerosis research using HeLa cells,” it returns 2,280,000 hits.

Henrietta’s family only found out about HeLa cells when they began getting requests for their blood — it seems the HeLa cells became contaminated by other cells in the lab and the researchers were scrambling to clean up the mistake.  The family was shocked to discover that Henrietta was still alive in the laboratory – Henrietta had not been asked for permission to take her cells for this use and neither was her family. Until this point, they had no idea that Henrietta was a superstar in medical research, thanks to her immortal cells.

In the sixty plus years of research using HeLa cells, billions of dollars in profit has been made from Henrietta Lacks, with not one cent being paid to her family. Finally in 2013, the National Institute of Health and Johns Hopkins agreed to the ethical right of the Lacks family to approve future use of Henrietta’s cells, but there are no financial reparations for her heirs. The doctors simply took something of enormous value from Henrietta without her permission and our biomedical system continues to use HeLa cells to this day.

Things are different now — we have informed medical consent for our treatments and doctors are not permitted to take things such as our genetic samples of tumors or healthy cells and use them in any form without our permission. We are protected from this form of privacy invasion, partly in thanks to the case of Henrietta Lacks.

At each doctor appointment we go to, we hear the same question mandated by patient protection laws – “would you like a copy of the informed consent form?”  With electronic health records and computer systems in place, most of us have an electronic signature pad slid across the desk to us to sign, which we do while we routinely decline receiving another printed copy of when we have just agreed to. But I want to ask how long has it been since you read this form and do you know exactly what it might say?  For me it has been several years and I am now asking for paper copies of these consent forms so I can read what I am agreeing to.  Are you allowing the doctors to share your medical information with others and for what purposes?  Is there a request for the commercial use of your information somewhere in that form?  Has anything changed in our consent from since our last visit?  We don’t know unless we actually read the informed consent.

Yes, we are swamped with forms and paperwork and it is easy to trust our providers and just sign the authorization form without reading a single word of it. My challenge to you is to change this pattern. Engagement occurs at many points in our medical journey with multiple sclerosis, and understanding what your informed consent form includes is an important step.

One of Henrietta Lack’s greatest legacies beyond her immortal cells is that her story created awareness of patient rights and I hope you will join me in honoring Henrietta the next time you are at the doctor’s office. When they ask if you want a copy of what you are about to sign, you will reply “yes” and you will take the time to read and understand your informed consent of your medical care.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this blog article are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Multiple Sclerosis.

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Laura Kolaczkowski comes from Beavercreek, Ohio, and worked at the University of Dayton for over 25 years until MS challenged her enough to go onto full-time disability. She is active in the MS community on multiple levels, and writes for her own personal blog, InsideMyStory and as a patient expert for MultipleSclerosis.net. Laura is the Lead Patient Representative and co-principal investigator for iConquerMS™, a patient powered MS research network. Laura freely admits her Liberal Arts background fuels her interest in patient engagement and empowerment and she struggles with the science of MS.
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