The cover of The Immortal Life of Henrietta Lacks succinctly proclaims the book’s storyline: “Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multimillion-dollar industry. More than 20 years later, her children found out. Their lives would never be the same.”
One big reason their lives would never be the same is because the book, written by Pacific Northwest native Rebecca Skloot, hit the New York Times Best Seller list in 2010 and stayed there for more than 75 weeks. Skloot entwines the personal stories of Lacks—who died of cervical cancer—and her family members, with the tale of how a particularly aggressive tumor removed from her body at autopsy in 1951 was used to grow cells (dubbed “HeLa”) that propagated easily at breakneck speed and ended up in labs all over the world. Scientists badly needed easy-to-grow “immortal” cells like the HeLa cells to do many kinds of research, but the lack of consent raises a host of ethical issues.
One result of Skloot’s book has been to underscore the pressing need to develop policies about patient privacy and informed consent that keep pace with the lightning fast developments in genome and related sciences. UW Medicine has the distinction of contributing the latest “chapter” to the HeLa story, both in publishing a paper with the official consent of the Lacks family and also conducting cutting-edge research that reveals more about a cancer genome than any previous work done anywhere.
“[Lacks’] story plunges us into societal and ethical considerations. It’s about consent and anonymity, or lack thereof,” says Jay Shendure, associate professor of genome sciences. “We tell people we want broad consent when people agree for their genomes to be used in our research, but we also promise to protect their privacy.”
In August, Shendure’s lab became the first group to publish a paper under a new policy governing the use of HeLa genome research supported by National Institutes of Health (NIH) funding. The policy emerged after NIH discussions with the Lacks family. The UW research published in the journal Nature is the first in which the Lacks family has been consulted and given consent for a specific use of their matriarch’s cells, after more than 74,000 research papers have been published based on work with HeLa cells over the past six decades.
The issue boiled over in March 2013 when a German lab published a study posting data from the HeLa genome to a publicly accessible website. As the data could be used to make inferences about genetic risk factors present in Henrietta Lacks as well as her descendants, the family was upset to have no control over what they view as very specific, personal information.
“We need to be transparent about what we’re doing. This isn’t about risk management; it’s about doing the right thing.”
Stephanie Fullerton, associate professor of bioethics and humanities
The UW was already making plans to contact the Lacks family about its study when the NIH reached out to strike an agreement with the family on the consent issue. The agreement allows select researchers to gain access to the HeLa sequence information, subject to the agreement of a special committee that includes a representative of the Lacks family.
It’s fitting that the UW study is the first to obtain the family’s consent because the research conducted by UW scientists—described by The New York Times as a “tour de force”—provides the most comprehensive picture of the HeLa cancer genome, or any cancer genome to date. As Skloot explains in her book, Lacks’ cancer—like most cervical carcinomas—was initially caused by an insertion of the Human Papilloma Virus (HPV) into the genome of a cell in her cervix. Andrew Adey, along with co-first authors Joshua Burton, Jacob Kitzman and Shendure, used “old school” technologies to reconstruct the genome sequence of HeLa with unprecedented resolution, including distinguishing the genetic variations present on “homologous” chromosomes (nearly identical but inherited from either mother or father). The team then showed that the HeLa genome—although chaotically rearranged in 1951—was surprisingly stable over 60 years of storage and sharing among scientific labs. By unscrambling precisely how the HPV genome had inserted, they were also able to identify the mechanism by which it switched on a nearby oncogene (cancer-causing gene).
“The sort of rearrangements we observed in HeLa cells are common in cancer cells. But nearly all of the rearrangements we observed were likely also present in her cancer in 1951,” says Adey. The researchers showed this by looking at strains decades apart and found that not much has changed over years of cell culture. “The work provides a reference for tens of thousands of experiments that have been done and will be done on this cell line. It also informs how we approach other cancer genomes,” explains Shendure.
Given the huge data sets genome scientists like Shendure are using around the world and the rapidly dropping cost of genome sequencing, there is more urgency for ethics to keep pace with the science. “We need to be transparent about what we’re doing. This isn’t about risk management; it’s about doing the right thing,” says Stephanie Fullerton, associate professor of bioethics and humanities. “We want to educate and engage people in building a research partnership. We need to take deep dives into individual genetics to learn more. You can ask more interesting scientific questions if you engage with people and they understand what kinds of answers a look at their samples provides.”
The UW is now revamping its own procedures to allow patients a greater say in research uses of their health data and samples.
The UW is now revamping its own procedures to allow patients a greater say in research uses of their health data and samples, according to John Slattery, vice dean of research and graduate education at the UW School of Medicine. In the past, the UW used the “black box form” that is still in use by many leading universities. The system was coercive in that it notified the patients of potential research uses but did not otherwise allow the choice to say no. If a patient checked in for surgery, he or she would have to sign a form granting the UW use of their tissue for research. If the patient didn’t sign the form, then the surgery wouldn’t be performed.
Soon many UW patients will be asked at check-in about making their tissue or tumor specimens available for research. Most of the time, the samples and information provided to researchers will be carefully scrubbed to protect patient identity. Researchers usually need specimens from people with certain medical characteristics and don’t need access to the medical record.
Having permission to access information will also help researchers track outcomes. Having more knowledge about outcomes and treatments will help clinicians evaluate what works and what the best evidence-based treatments are.
The involvement of the Lacks family in the informed consent process has been a long time coming, but now they are able to embrace their role. Before Lacks’ daughter Deborah died in 2009, she told Skloot, “Maybe I’ll come back as some HeLa cells like my mother. That way we can do good together out there in the world. I think I’d like that.”
The news from Jay Shendure’s lab is only the latest UW piece in the decades-long HeLa story. Stanley Gartler, emeritus professor who joined UW in 1957, was studying 18, supposedly independent, distinct cell lines—one of which was HeLa— during his work with human genetics in cell culture.
“I started characterizing the cells and found out that they all had the same genotypes and that didn’t add up,” he recalls.
Gartler discovered in all the cell lines a genotype called G6PDA, which is found only in African-Americans. Since HeLa was from an African-American and it was the first permanent human cell line established, it was almost certain that all the other so-called, independent cell lines were contaminants of HeLa.
Gartler presented his information at a major conference in September 1966. Many scientists in the crowd thought that they were creating a library of different human tissues, but didn’t realize that they had simply been growing and re-growing HeLa cells. They had spent millions of dollars researching cells that they thought were kidney or liver cells or other cell types, but Gartler proved that all the cells were contaminated and taken over by HeLa cells.
“The really experienced people in the field had thought some kind of contamination was going on,” explains Gartler. Despite drawing the ire of some scientists, Gartler remained true to his scientific values, correcting error and championing facts.
The Immortal Life of Henrietta Lacks is available at University Book Store. UWAA members save 10%. www.ubookstore.com