Henrietta Lacks, the Ethics of Consent is part two of a series. To learn about her life, check out our blog The Life of Henrietta Lacks.
Henrietta Lacks became immortal, as it were, due to her HeLa cells. These cell samples, taken while she was being treated for cervical cancer, have been developed and included in over 67 years of research. That research saved innumerable lives over the last six and a half decades. How is it, then, that Mrs. Lacks’ family didn’t even know of this great ‘gift’ she gave to the world? And is that how things should be, when those cells are to this day being sold for research?
Lacks and Medical ethics: issues of consent, privacy, research for common good, and ownership of biological samples.
So… Here’s the thing, and it’s a sticky thing. As researchers, and people who have lost too many to cancer and other diseases, the more research done, the happier we are here at The Researcher’s Gateway. But where are the lines? What should you do, and how should you do it when using someone’s cells, in this instance, for research. We don’t know the answer, but here are some things to consider and maybe discuss with your friends, family, students.
Consent – Neither Henrietta Lacks nor her family were asked for consent.
Lacks wasn’t asked for consent; her family didn’t know what had happened with her cells. This was standard practice in the 50s (for all races, not just blacks). In fact, it is still common practice today for tissue samples to be used for research, but institutions now have standards for getting consent. Because of Lacks, this issue has become a current debate–personal consent vs. common good.
Lack of understanding was as much of a problem as outright consent. Rebecca Skloot, who wrote “The Immortal Life of Henrietta Lacks” said:
“If you spoke another language and you needed to see the doctor, you’d be provided with a translator – but if it’s the science you don’t understand, there’s no one there to translate for you, so you go away simply not knowing what’s been said. I think there should be science translators, who are trained to communicate complicated medical stuff in a straightforward, easily digestible manner. It would have made a huge difference to Henrietta’s family.”
Privacy – There should be some anonymity and protection of people like Lacks and her family.
Dr. Gey used part of Lacks’ name in the naming of the samples, without, again, her permission or that of her family. Today researchers are much more careful that samples are anonymous.
The Lacks family found out about the tissues when they were asked for blood samples. Cultures had gotten contaminated and scientists wanted family blood samples so that they could separate Lacks’ cells from others. This has recently raised great concern for the privacy of others as well concern over sequencing the DNA and making that information public.
As Lacks’ story gets known, information about her and her family’s medical history has been made public. It is standard for samples to be used for research–justified because used for the common good. But Lacks’ family can’t even afford health care, and are not benefitting from the research. Her family suffered from a wide range of health issues. Day Lacks had prostate cancer and asbestos-filled lungs. One son had a bad heart; Deborah had arthritis, osteoporosis, nerve deafness, anxiety, and depression. All of these things became public over the years with the lack of anonymity.
Ownership – Who actually owns the cells of Henrietta Lacks remains a big ethics question.
Some of the Lacks family were upset over the use of the cells, and that they were being sold to researchers around the world without them getting any financial benefit or having any say in how they were used. Eventually, the Lacks family was given some control over how the cultures are used. Yet, still, they get no financial benefit, even though samples are being sold around the world. Johns Hopkins also never patented the cells.
So, it is important not to see the issue as using tissue samples for research as bad, but rather collecting and using the samples in ethical ways that respects the rights of the source person.
“Tissue is so often dehumanised – it’s referred to in medical reports and documents, and no one ever seems to remember that for every single biological sample that’s used in any laboratory, anywhere, there’s a person.” Rebecca Skloot
The HeLa Cells have been vital for research–17,000 US patents.
The cells have been used for the polio vaccine and medications for Parkinson disease and leukemia. Scientists even sent her cells on the first space missions to test the effect of zero gravity. They are used for research on cloning, gene mapping and in vitro fertilization, as well as the effects of toxins, radiation, viruses, and carcinogens.
Multiple Nobel Prizes have been awarded to people working with HeLa cells:
- 2008 : Nobel Prize for Research awarded to Harald zur Hausen for linking viruses to the cause of different cancers.
- 2009: Nobel Prize for their Research awarded to Dr. Elizabeth Blackburn, Dr. Carol Greider, and Dr. Jack Szostak for their work with the compound structure at the end of a chromosome, called telomeres.
- 2014: Nobel Prize awarded to Dr. Eric Betzig, Dr. Stefan W. Hell, and Dr. William E. Moerner for their advances in the Live Viewing of Cellular Growth.
Today Henrietta Lacks is starting to get recognition for a gift to the world she never knew she had provided.
On 14 May 2018 Lacks was honored by the hanging of her portrait, painted by Kadir Nelson. He titled it “The Mother of Modern Medicine”. It hangs just inside one of the main entrances of the Smithsonian National Portrait Gallery in Washington, D.C. Three of her grandchildren were at the unveiling of the portrait of a woman they never knew. It was an amazing moment for them.
Because of the questionable ethics behind the use of her cells, Henrietta Lacks has not just been dubbed the “Mother of Modern Medicine”. Today she is considered one of the most powerful symbols of informed consent.