The story of Henrietta Lacks, informed consent, and the Belmont Report
On January 29, 1951, Henrietta Lacks — a 31-year-old Black tobacco farmer and mother of five — went to Johns Hopkins Hospital in Baltimore with severe abdominal pain and abnormal bleeding. She was diagnosed with aggressive cervical cancer.
During treatment, doctors took tissue samples from her cervix without her knowledge or consent. This was common practice at the time — informed consent as we know it did not exist. Johns Hopkins was one of the few hospitals that would treat Black patients, though in racially segregated wards with unequal care.
Researcher George Gey received Henrietta's tissue sample and discovered something unprecedented: her cells didn't die. Most human cells survive only a few weeks in culture, but Henrietta's cells doubled approximately every 24 hours and kept growing indefinitely.
Gey named them "HeLa" — abbreviating her first and last name. They became the first immortal human cell line ever created, a breakthrough that would transform biology. Henrietta herself died on October 4, 1951, at age 31.
HeLa cells were used to develop and test the Salk polio vaccine in 1954, one of the most important medical breakthroughs of the 20th century. The cells were mass-produced and shipped to labs worldwide — by 1953, one lab was producing trillions of cells per week.
They went on to contribute to cancer research, HIV/AIDS research, gene mapping, cloning, and the development of drugs for herpes, leukemia, influenza, and Parkinson's disease. HeLa cells have been cited in over 110,000 scientific publications.
Scientists began contacting the Lacks family for blood samples to help research HeLa cell contamination issues. This is how the family first learned that Henrietta's cells existed — over two decades after her death.
The family was devastated and confused. They received no compensation despite HeLa cells having been commercialized since 1955. While biotech companies profited, the Lacks family struggled to afford basic healthcare — a painful irony given that Henrietta's cells had advanced medicine globally.
In response to decades of ethical violations in human research — including the Tuskegee Syphilis Study (1932–1972) — the National Commission for the Protection of Human Subjects published the Belmont Report in 1979.
It established three core principles: Respect for Persons (informed consent, autonomy), Beneficence (maximize benefit, minimize harm), and Justice (fair distribution of research burdens and benefits). It became the foundation for all US regulations governing human subjects research, including IRB requirements.
The Immortal Life of Henrietta Lacks was published in 2010 and became a cultural landmark. Skloot spent a decade reporting the story, working closely with the Lacks family. The book spent more than two years on the New York Times bestseller list.
It forced a public reckoning with how science had treated a Black woman's body as a resource without her knowledge — and how her family continued to be impacted by research done without consent or compensation. A TV movie followed in 2017, starring Oprah Winfrey.
In 2013, researchers published the full genome sequence of HeLa cells — without the Lacks family's permission. Because HeLa DNA contains Henrietta's actual genetic code, this exposed private genetic information about her living descendants, including their susceptibility to hereditary diseases.
After public outcry, the NIH reached an agreement with the Lacks family: access to the full HeLa genome sequence would require review by a panel that included family members. It was a landmark moment for genetic privacy rights.
After a lawsuit filed in 2021, the Lacks estate reached a confidential settlement with Thermo Fisher Scientific — a major biotech company that had profited for decades from selling HeLa cells without compensating the family. The terms were not disclosed.
Lawsuits against other companies that commercialized HeLa cells continue. The case remains one of the most significant legal battles over the commercialization of human biological material and who has rights to profit from it.
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Every research participant must be treated as an autonomous agent — someone capable of making their own decisions. This means they must be fully informed about what a study involves, what risks exist, and what will happen to their biological samples. Consent must be voluntary, free from coercion.
In Henrietta's case: her cells were taken without any disclosure that they would be used for research, grown indefinitely, commercialized, or shared worldwide. She had no opportunity to consent or refuse. This is a foundational violation of this principle.
✗ Violated in Henrietta's caseResearch should maximize benefits and minimize harms to participants. Researchers have an obligation to protect subjects from harm — physical, psychological, social, and economic. Benefits to society must be weighed against risks to the individual.
HeLa cells brought enormous benefit to global medicine — but the person those cells came from received no benefit. Her family faced financial hardship while companies profited. The benefits of her cells were not shared with those who bore the cost of providing them.
✗ Violated in Henrietta's caseThe risks and benefits of research should be distributed fairly across society. Vulnerable groups — including racial minorities, prisoners, people in poverty — should not bear a disproportionate burden of research while wealthier or more powerful groups reap the benefits.
Henrietta was a poor Black woman in a segregated hospital in 1951. Her cells were taken and used to benefit largely white, wealthy institutions and corporations. Her community — which faces disproportionate rates of cervical cancer — continued to face barriers to the very treatments her cells helped create.
✗ Violated in Henrietta's caseAn IRB is a committee that reviews and approves research involving human subjects before it begins. Every institution receiving federal funding must have one. IRBs evaluate whether research is ethical — checking for informed consent, fair participant selection, and acceptable risk-benefit ratios.
The IRB system grew directly out of ethical failures like Tuskegee and HeLa. Today, if a researcher wants to use human tissue — even leftover surgical samples — they must get IRB approval and often patient consent. This system didn't exist in 1951 when Henrietta's cells were taken.
When a person's genome is sequenced and published, it doesn't just reveal information about them — it reveals information about their entire biological family. Genetic data is uniquely identifying and permanent, raising privacy concerns that go beyond what traditional consent frameworks were designed for.
The 2013 publication of HeLa's genome without family consent exposed private genetic information about Henrietta's living descendants. This prompted the NIH to give the Lacks family a role in controlling access to that data — a first-of-its-kind agreement that shaped ongoing genetic privacy policy.
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The HeLa case is part of a documented history of medical exploitation of Black Americans — including the Tuskegee Syphilis Study, where Black men with syphilis were deliberately left untreated without their knowledge for 40 years. This history has produced generational mistrust of medical institutions that persists today.
During COVID-19, this mistrust was cited as one factor in vaccine hesitancy in Black communities. Understanding the HeLa story isn't just history — it explains present-day health disparities and why rebuilding trust requires systemic accountability, not just individual reassurance.
In most US jurisdictions, once biological material (blood, tissue, cells) leaves your body and is used in research, you no longer have legal ownership of it or rights to profit from any discoveries it enables. This legal framework has been controversial and is still evolving.
The Lacks family's settlement with Thermo Fisher in 2023 is one of the first times a company has been held financially accountable for profiting from non-consensual biological material. It may reshape how courts and legislatures think about ownership rights in biological research going forward.
HeLa cells remain one of the most widely used research tools in biology. They are actively used today in COVID-19 research, cancer studies, and vaccine development. The science built on them is inseparable from the ethical violations that made it possible.
This creates an ongoing ethical question: given that HeLa cells were obtained unethically, is it ethical to keep using them? Most scientists argue yes — the harm already occurred, and stopping use would not benefit Henrietta. But the question of how to honor her and compensate her family remains very much unresolved.
Informed consent is now legally required for human subjects research in the US. IRBs review all federally funded research. The Common Rule (45 CFR 46) provides baseline protections. These are real improvements that grew directly from failures like HeLa and Tuskegee.
What hasn't changed: racial disparities in healthcare access and outcomes persist. Black women in the US still face significantly higher cervical cancer incidence and mortality rates than white women — the same cancer that killed Henrietta. The ethical framework improved; the underlying inequities that made the violation possible largely did not.
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