Friday, 21 April 2017 10:43

After the book, Henrietta Lacks' family continues to engage in patients' rights

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Published in mBiosphere

Lacks 4Henrietta Lacks' cells, called HeLa cells, shown here with blue nuclei, green microtubules, and orange Golgi apparati. source

In 1950, the vaccination schedule was much different than what it is today. Edward Jenner’s famous discovery of the protective effects of cowpox from smallpox had led to the use of intradermal vaccination with the vaccinia virus, largely produced in animals or eggs. Toxoids, inactivated toxins, had facilitated diphtheria and tetanus vaccines, while killed Bordetella pertussis protected against whooping cough (switched to an acellular vaccine in the 1990s). But other diseases against which modern vaccines are protective, especially polio, remained scourges of society.

The importance of an immortalized human cell line to developing a polio vaccine can’t be overstated. Polio is a virus that infects only humans, so generating standardized vaccine in large quantities was impossible. Large-scale production was only made feasible by the first immortalized human cell line, taken as part of a cervical cancer tumor biopsy from a young woman named Henrietta Lacks during her treatment at Johns Hopkins University in Baltimore, Md. Her cells (pictured right), labeled HeLa after her first and last name, removed the threat of polio disease for millions – and all without compensation, consent, or even her knowledge that these cells would be used in scientific study.

The Henrietta Lacks story 

Lacks 3Henrietta Lacks source.

The development of HeLa cells as the first immortalized, or continuously dividing, human cell line is one of the great ethical problems of modern medicine. While her cells have helped scientists uncover the basic nature of the cell’s inner workings and have been used as a method to test cancer chemotherapies and other therapeutics, this research was all conducted under the dubious ethical circumstances by which her cells were collected. Neither Lacks nor her family were told that the cells had been taken for experimental purposes – a practice that now requires patient consent. Lacks ultimately died of her cancer, but her children lived for decades before learning the fate of their mother’s tissues.

The Lacks family discovery of the HeLa cell lineage, made in the 1970s, was recorded in Rebecca Skloot’s well-received book, The Immortal Life of Henrietta Lacks. In the book, Skloot documented her journey to meet the Lackses and tell their story, eventually making her own participation a part of their narrative. The family reaction was understandably mixed: grateful for the help their mother’s cells have offered the scientific community, but suspicious of the secretive manner in which it was done and the lack of recognition or recompense by institutions benefitting from the cells’ use. The opaque process sowed further distrust of scientific community in the surrounding Baltimore community, already rife with racial and economic disparity, where Lacks, a poor black farmer, had been treated in the “colored” ward by primarily white doctors. 

Skloot recorded Lacks’ children’s and grandchildren’s growing awareness of the vital role HeLa cells have played in numerous medical advances, including some that are still being sold by for-profit companies. The story raises questions about the ethics of profit-sharing by companies who rely on this cell line and highlights a general lack of recognition of the huge experimental and practical gains made possible by HeLa cells that endure today. While scientists have long admired Salk for his contribution to the polio vaccine, many in the scientific community are still learning of Lacks’ contribution in polio vaccine production. An HBO movie covering their account hopes to bring the story of Henrietta Lacks and her immortalized cells to an even broader audience. 

After the Book: The Lacks Family Remains Engaged

Lacks 1David Lacks, Jr., and Jeri Lacks-Whye, speaking at the 2016 ABRCMS meeting. source

Publishing the Lacks’ family story in 2010 didn’t end their struggle with patients’ rights, research ethics, and privacy invasion, but it has helped to catapult these issues into the public eye. The attendees at the 2016 Annual Biomedical Research Conference for Minority Students (ABRCMS) meeting in Tampa, Fla., were fortunate to hear two Lacks family members, Jeri Lacks-Whye (Lacks’ granddaughter) and David Lacks, Jr. (Lacks’ grandson), speak about their experiences navigating ethically uncharted territory since the book’s release.

Lacks-Whye introduced one of the more newsworthy events since the book’s publication, which occurred due to advancements in DNA sequencing technologies. New techniques made possible the sequencing of the HeLa cell line, which was published by a German research group in an open-access journal. This meant that Henrietta Lacks’ genetic records – and those genetic characteristics which she had potentially passed down to her children and grandchildren, including disease-associated genes – had become publicly available.

The Lackses weren’t notified that this information had been published; it was Skloot who contacted the family to inform them. “I asked if it was illegal,” said Lacks-Whye, “and Rebecca said no, but it is unethical.” To fight the release of their personal genetic history, the Lacks family hired attorneys and Skloot wrote a New York Times editorial, “The Immortal Life of Henrietta Lacks, the Sequel.” The Lacks family entered into talks with officials from the National Institutes of Health (NIH), including NIH Director Francis Collins and Director of the Division of Scientific Data Sharing and Office of Science Policy Dina Paltoo. Over three meetings held in 2013 (one held during the 2013 ABRCMS meeting), they discussed the Lacks family experiences, the discernible information derived from the HeLa genome, what sequences are already publicly available, and the extreme value of HeLa cells to science and medicine. All parties acknowledged the uniqueness of the situation while discussing access options for HeLa sequencing information.

A mutually agreed-upon decision came in the creation of a “controlled-access repository,” in which scientists may request access to the sequence data. Results stemming from this data can only be used for health, medical, or biomedical research after requestors disclose commercial plans and provide acknowledgement in publications and presentations. Collins wrote up the agreement on the NIH Director’s Blog, where he explained that “requests will be fielded by a working group consisting of physicians, scientists, a bioethicist, and two members of the Lacks family.”

“The importance of community engagement and partnerships is one outcome of the experience,” said Paltoo to the ABRCMS audience. The Lacks family wants the cell line to continue to contribute toward science and medical advances, but they want to know what research is being conducted with their ancestor’s cells. “We don’t want to stop science,” said Lacks, Jr. “We are hoping the genome sequence will do as much as the cells themselves. But we don’t want to be surprised,” especially given that future technologies have yet to be imagined.

Lacks 5David Lacks, Jr., and Jeri Lacks-Whye participate in a microbiome-related exercise. source

The agreement also stipulated a presentation at a national meeting, such as that held at ABRCMS, to discuss the ethical questions surrounding the HeLa cell circumstances. The value in presenting to an ABRCMS audience is in its youth; the attendees are largely undergraduate students who will be future scientific leaders. Impressing on them the importance of community, patients’ rights, and other moral issues will help ensure mistakes of the past won’t be repeated.

After their presentation, Jeri Lacks-Whye and David Lacks, Jr., both answered questions from the audience and walked around the conference floor – even taking time to learn about the effects of antibiotics on the microbiome at the American Society for Microbiology booth (shown at right)! If you want the opportunity to listen to and interact with amazing speakers like these, note that registration will be opened June 30th for the 2017 ABRCMS meeting to be held November 1-4th this year in Phoenix, Arizona. To learn more about ABRCMS, including how to submit an abstract, purchase a booth, or sponsor the conference, please visit the conference website.

Last modified on Friday, 21 April 2017 15:23
Julie Wolf

Julie Wolf is the ASM Science Communications Specialist. She contributes to the ASM social media and blog network and hosts the Meet the Microbiologist podcast. She also runs workshops at ASM conferences to help scientists improve their own communication skills. Follow Julie on Twitter for more ASM and microbiology highlights at @JulieMarieWolf.

Julie earned her Ph.D. from the University of Minnesota, focusing on medical mycology and infectious disease. Outside of her work at ASM, she maintains a strong commitment to scientific education and teaches molecular biology at the community biolab, Genspace. She lives in beautiful New York City.