Henrietta Lacks’ Cells Were Taken Without Consent, so How Is Her DNA Protected Today?

From crucial vaccines to new insights about diseases, nearly all biomedical research starts with the study of human cell samples in a lab.  

All of these samples are originally taken from human patients. But when they make their way to the lab, most of these samples — including the HeLa cell line, one of the world’s most prominent cell samples — are viewed independently from the person they were sampled from. 

These samples don’t exist in a vacuum. Notably, the HeLa cell line was initially taken from Henrietta Lacks, a Black woman from Maryland who was being treated for cervical cancer at the Johns Hopkins Medical Center in 1951. Cell biologist George Otto Gey sampled Lacks’ cells without her consent long before the U.S. had implemented its current policy requiring patient permission to collect biological samples.  

“We didn't think about [those cells as belonging to] Henrietta Lacks – HeLa was the designation in the laboratory,” says Mark Fleury, a policy principal for the American Cancer Society who previously worked as a bench scientist. “Many of the cell lines just had some alphanumeric designation that only meant something to someone who was actually working with it.” 

Nearly 73 years after her death, Lacks’ cells still live on today.

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HeLa cells are the first human cells known to reproduce indefinitely in a lab — they’ve facilitated groundbreaking research on polio and the human papillomavirus (HPV) and even helped scientists develop a COVID-19 vaccine.  

Yet these discoveries are complicated by the HeLa cell line’s non-consensual origins. Just over 10 years ago, the National Institute of Health (NIH) began taking steps to limit access to Lacks’ genomic data in an effort to protect her descendants and preserve her story. And as genetic technology continues to advance policymakers and researchers alike are questioning whether there’s a truly reliable way to keep Lacks’ data private.  

Much of the research that uses the HeLa cell line hinges on genetics. For example, cancer, Fleury says, is “a disease of the genome” — it infiltrates our cells and, in some cases, introduces foreign DNA into the nucleus, which is what causes cell replication and tumor growth. 

“We know that in cancer, there's a lot of genomic alterations in the chromosomes,” says Sabarinathan Radhakrishnan, who researches cancer genomics at the National Centre for Biological Sciences in India. “You can have some chunks of DNA move around or chunks of DNA that can get amplified.” 

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HeLa cells are unique in their ability to grow and divide indefinitely in a clinical setting; while all cancer cells can replicate within the human body, other human cell lines are often very difficult to maintain in a lab.

Because of HeLa cells' so-called immortality — meaning that they keep on dividing when most cells would perish — they’ve become an extremely valuable tool for researchers like Radhakrishnan. That ability to survive through countless generations of cells can help scientists who are, for example, looking to study how and why cancers form.  

This also means that many of the studies that use HeLa cells also rely heavily on Lacks’ genetic data. Biomedical researchers often use summary data of cancer patients’ cell lines, which can be accessed through databases such as the Cancer Genome Atlas. But most of this data doesn’t include information about the patient's ancestry, genetics, or identity, Radhakrishnan says. 

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For the HeLa cell line, however, the genetic information they carry is not only widely used but also very easy to connect directly back to Lacks and her descendants. According to Fleury, having your genetic information publicly available could put you at risk of being denied healthcare or life insurance if a provider sees that you're genetically predisposed to certain conditions.  

Today, patients taking part in genetic studies are subject to protections under the NIH’s Common Rule, which requires patient consent for all research and mandates that patients are made aware if their data is to be used in future studies. And laws like The Genetic Information Nondiscrimination Act of 2008 protect individuals from discrimination based on their genetic data. 

But for descendants of Lacks and others whose genetic data was taken before these laws were put in place, it can be challenging to correct violations of these protections that occurred before they came into effect. 

“Once you can connect a genetic sequence to a person, that creates a lot of privacy issues, and I think part of the question in the last Common Rule was how identifiable is a full genetic sequence,” Fleury says. “It's sort of like your fingerprint. It's only yours. And so, again, I think it's an area that we're still sort of grappling with.” 

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In 2013, a team of researchers from the European Molecular Biology Laboratory in Germany published the fully sequenced HeLa genome but an immense backlash caused them to take the information down almost immediately. 

After speaking with the Lacks family about their privacy concerns, the NIH decided to step in and limit access to the HeLa cell line. Today, in order to access the genome, researchers must submit an application to the NIH’s HeLa Genome Data Access Working Group, which is composed of a team of scientists and several of Lacks’ direct descendants.  

“It's really about working with the research community, to engage folks and help them understand the role of the agreement (with the Lacks family), the history of the agreement, and the ethical and other related considerations,” says Garth Graham, who co-chairs the NIH working group along with Lyric Jorgenson. 

Jorgenson, Graham, and the rest of the working group review research statements from scientists who are interested in using the HeLa cell line. They consider how interested parties plan to use the cell line, whether it’s in line with a biomedical research objective, and whether applicants plan to develop intellectual property based on their findings.  

2024 marks the tenth year that the working group has reviewed applications for HeLa genome access. They’ve approved 91 of the approximately 96 requests for access that they’ve received, including one from Radhakrishnan in 2022.  

“In this case, it's also helped us to see that, even though it was not done well before, we can be even more aware and acknowledge how this particular cell line has helped a lot in the medical service field,” Radhakrishnan says of his interactions with the HeLa genome working group. 

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A lot has changed over the past ten years since scientists first published the fully sequenced HeLa genome. Sequencing a human genome used to be an extremely expensive and time-consuming task: The Human Genome Project, completed in 2003, took 13 years to sequence the first genome. But today, new DNA sequencing technologies mean you can fully sequence a genome in a matter of hours for just a few hundred dollars. 

Given these advancements and how accessible DNA sequencing has become, it’s hard for the NIH to prevent unscrupulous researchers from sequencing Lacks’ genome themselves. Still, Jorgenson and Graham say they remain committed to educating the research community about why patient consent matters. 

It’s a particularly important goal for descendants of Black patients like Lacks. The American healthcare system has a long legacy of leaving Black women in the dark when it comes to their medical treatments, and Graham says it’s important for medical professionals to work on rebuilding trust with Black patients.  

These structural inequities persist today: According to the American Cancer Society, Black women are at 22 percent higher risk for cervical cancer than white women — but they’re less likely to be diagnosed at an earlier stage than white women.  

“Black women and Native American women have a 65 percent higher death rate [from cervical cancer.] That's an enormous disparity that we need to address,” says Katie McMahon, a policy principal with ACS. “And equitable access to these prevention and early detection tools is what will reduce those disparities.” 

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Since the Lacks family reached its agreement with the NIH in 2013, Radhakrishnan and other scientists say the research community has become more aware of the importance of patient consent and privacy in their day-to-day studies. But as DNA sequencing technology becomes more and more advanced, policymakers like Garth and Jorgenson are left wondering whether new technology will outpace privacy concerns. 

 “As technology allows us to link information more, there are questions about how you protect data in that environment,” Jorgenson says. “Is there a way that you actually can ever completely ensure that something is anonymized or de-identified?” 

For the time being, particularly as genetic technology continues to march forward, answers to such questions remain frustratingly murky.

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Our writers at Discovermagazine.com use peer-reviewed studies and high-quality sources for our articles, and our editors review for scientific accuracy and editorial standards. Review the sources used below for this article:

• Cells and Surveys: Should Biological Measures Be Included in Social Science Research? Chapter 12: Informed Consent for the Collection of Biological Samples in Household Surveys

• EEOC. The Genetic Information Nondiscrimination Act of 2008

• National Institutes of Health. ACD HeLa Genome Data Access Working Group

• American Cancer Society. The State of Cancer Disparities in the United States