Case Study: Indigenous Genomic Data and the HeLa Cells Legacy

"People have the right to know what is being done with their tissues. They have the right to control what is done with their tissues." — David Lacks Jr., grandson of Henrietta Lacks, 2013

Overview

In 1951, a young Black woman named Henrietta Lacks was treated for cervical cancer at Johns Hopkins Hospital in Baltimore. Without her knowledge or consent, a sample of her cancer cells was taken and sent to a researcher named George Gey. Those cells — later known as HeLa cells — became the first human cell line to survive and reproduce indefinitely in a laboratory. They revolutionized biomedical research, contributing to the development of the polio vaccine, advances in cancer treatment, in vitro fertilization, and gene mapping. HeLa cells have been used in more than 75,000 published studies. They have generated billions of dollars in commercial value.

Henrietta Lacks never consented. Her family was not informed for decades. They received no compensation while pharmaceutical companies built products on her cellular data.

More than four decades later and 2,000 miles away, members of the Havasupai Tribe in Arizona provided blood samples to researchers at Arizona State University (ASU) for a study on diabetes — a condition devastating their community. The researchers then used the samples, without the tribe's knowledge or consent, for studies on schizophrenia, inbreeding, and the tribe's migration history — research that directly contradicted Havasupai cultural beliefs and caused profound harm.

These two cases — separated by decades but connected by a common thread — illuminate the deepest questions Chapter 3 raises about data ownership: Who controls biological data? What does consent mean when power is asymmetric and knowledge is unequal? And how do indigenous data sovereignty principles offer a fundamentally different answer from Western frameworks?

Skills Applied: - Analyzing historical data extraction through the lens of data ownership theories (Section 3.2) - Applying the CARE Principles for Indigenous Data Governance (Section 3.4) - Evaluating the gap between formal consent and meaningful consent - Connecting biological data governance to broader data ethics

Part I: The HeLa Cells

Henrietta Lacks and the Origin of HeLa

Henrietta Lacks was born in 1920 in Roanoke, Virginia, and raised in a small tobacco-farming community in Clover, Virginia. She married David Lacks and moved to Baltimore, where she worked in a tobacco factory. In January 1951, at age 30, she was diagnosed with an aggressive form of cervical cancer at Johns Hopkins Hospital — one of the few hospitals in the area that treated Black patients in the era of Jim Crow segregation.

During her treatment, a biopsy sample was taken from her tumor and sent — without her knowledge — to Dr. George Otto Gey, a researcher who had been trying for years to grow human cells in the laboratory. Every previous attempt had failed: human cells died within days in culture. But Henrietta's cancer cells were different. They reproduced aggressively, doubling every 20 to 24 hours. They did not die.

Gey named the cell line "HeLa" — for Henrietta Lacks — and began distributing samples to researchers worldwide. Henrietta Lacks died on October 4, 1951, at the age of 31. She was buried in an unmarked grave. Her cells, however, were just beginning their second life.

The Scientific Legacy

The impact of HeLa cells on biomedical research is difficult to overstate:

• Polio vaccine: Jonas Salk used HeLa cells to test his polio vaccine before human trials. The cells' reliability and reproducibility made large-scale testing possible.
• Cancer research: HeLa cells became the standard platform for studying cancer biology, drug responses, and radiation effects.
• Virology: HeLa cells were used to study HIV/AIDS, influenza, Ebola, and dozens of other viral diseases.
• Genetics: In 2013, researchers at the European Molecular Biology Laboratory (EMBL) sequenced and published the complete HeLa genome — making Henrietta Lacks's genetic information publicly available without her family's consent.
• Commercial products: HeLa cells have been bought and sold by biotech companies for decades. The global market for HeLa cells and HeLa-derived products is estimated at billions of dollars.

HeLa cells are, by any measure, one of the most important biological materials in the history of science.

The Family's Experience

The Lacks family learned about HeLa cells in 1973 — more than twenty years after Henrietta's death — when researchers contacted them seeking blood samples for genetic research. The family was shocked to learn that Henrietta's cells were alive in laboratories worldwide. They were further shocked to learn that they had no legal claim to compensation, despite the billions of dollars of commercial value the cells had generated.

For decades, the family struggled financially while HeLa cells were sold commercially. Henrietta's children and grandchildren lacked health insurance even as their mother's cells were used to develop treatments they could not afford to access.

In 2010, journalist Rebecca Skloot published The Immortal Life of Henrietta Lacks, which brought the story to widespread public attention. In 2013, after the EMBL genome publication, the NIH reached an agreement with the Lacks family: the family would be represented on a committee that reviews requests to access the HeLa genome sequence. In 2023, the family reached a settlement with Thermo Fisher Scientific, a major commercial distributor of HeLa cells, for undisclosed terms.

The Ownership Question

The HeLa case raises the data ownership question in its starkest form:

• Under the property framework: Henrietta's cells came from her body. If data about her body is her property, the cells — and all derivatives — were taken without consent and used for commercial gain without compensation. This is straightforward theft under a property theory.
• Under existing U.S. law: The landmark 1990 California Supreme Court case Moore v. Regents of the University of California held that patients do not have property rights over their biological tissues once those tissues have been removed. Under this precedent, Henrietta's cells were legally no one's property — and therefore free for research and commercial use.
• Under the rights-based framework: Henrietta's right to informational self-determination was violated. She was not informed about how her biological material would be used. She had no opportunity to consent or refuse. The GDPR's right to be informed and right to object did not exist in 1951 — but the principle they embody (that people have a right to control how information about them is used) was violated in spirit.
• Under the commons framework: One could argue that HeLa cells, given their extraordinary scientific value, should be a shared resource for the common good. But commons governance requires community-determined rules for access and benefit sharing — precisely what was absent.

Part II: The Havasupai Case

The Tribe and the Study

The Havasupai Tribe lives at the bottom of the Grand Canyon in a remote community accessible only by foot, mule, or helicopter. With a population of approximately 650, the Havasupai have experienced devastating rates of Type 2 diabetes — a condition linked to the forced dietary changes imposed by colonization and reservation life.

In the early 1990s, Havasupai tribal members agreed to provide blood samples to researchers at Arizona State University for a study aimed at understanding the genetic basis of their high diabetes rates. The informed consent forms described the study's purpose as research into "the causes of behavioral/medical disorders." Approximately 200 blood samples were collected between 1990 and 1994.

The Unauthorized Research

The samples were used for the diabetes study as promised. But they were also used — without the tribe's knowledge or consent — for research on:

• Schizophrenia: Researchers studied the genetic basis of mental illness using the blood samples. Mental illness carries significant stigma in many indigenous communities, and the tribe had not consented to this research.
• Inbreeding: Researchers analyzed genetic markers for consanguinity (relatedness within the community). This research was deeply offensive to the Havasupai, who perceived it as suggesting the community was inbred.
• Migration and population history: Researchers used the samples to study the Havasupai's ancestral migration patterns. Their findings contradicted the Havasupai's own creation narrative — their belief that they originated in the Grand Canyon. The researchers published findings suggesting the tribe's ancestors had migrated across the Bering Strait land bridge from Asia.

Each of these unauthorized studies violated the tribe's trust. The migration study was particularly devastating: it directly challenged a foundational cultural belief and was conducted without any consideration of its impact on the community.

The Legal Outcome

In 2004, the Havasupai Tribe filed a lawsuit against Arizona State University and the Arizona Board of Regents. The case was settled in 2010: ASU returned the remaining blood samples to the tribe, paid $700,000 to 41 tribal members, provided scholarships, and agreed to assist in developing health programs for the community.

The return of the blood samples was deeply symbolic. In a ceremony, the Havasupai buried the returned samples in the Grand Canyon — returning what had been taken to the land where it belonged.

The Data Sovereignty Question

The Havasupai case illustrates why individual informed consent is insufficient for indigenous genomic data:

1. The consent forms were narrowly written but broadly interpreted. Tribal members consented to diabetes research. The phrase "behavioral/medical disorders" was interpreted by researchers to encompass schizophrenia research — an interpretation that no reasonable tribal member would have anticipated or endorsed.

2. Individual consent cannot protect collective interests. Even if every individual Havasupai member had signed a perfectly drafted consent form for diabetes research, no individual had the authority to consent on behalf of the tribe to research on migration history or genetic relatedness. These are collective matters — they concern the community's identity, narrative, and cultural integrity.

3. The power asymmetry was total. University researchers had institutional resources, technical expertise, and the authority to publish findings in academic journals. The Havasupai had none of these. The researchers' professional incentives (publish or perish) aligned with conducting as many studies as possible on the samples. The tribe's interests were invisible in this calculus.

Analysis Through Chapter Frameworks

The CARE Principles Applied

The CARE Principles (Section 3.4.1) provide a framework for evaluating both cases:

Connecting the Cases

The HeLa and Havasupai cases are separated by four decades, but they share a structural pattern:

1. Biological material taken from marginalized communities — a Black woman under Jim Crow, an indigenous tribe in a remote reservation
2. Consent that was absent, inadequate, or deceptively obtained — no consent at all (HeLa) or consent for a narrow purpose that was unilaterally expanded (Havasupai)
3. Researchers and institutions that benefited enormously — publications, patents, commercial products, scientific prestige
4. Communities that bore the costs — emotional harm, cultural violation, financial exclusion, loss of control over their own biological narratives
5. Legal systems that provided inadequate redress — Moore v. Regents denied property rights over tissues; the Havasupai settlement came years after the harm was done

This pattern is what indigenous data sovereignty movements seek to break. The CARE Principles are not abstract — they are a response to concrete, documented, repeated instances of data extraction from communities that lacked the power to resist.

The Contemporary Challenge: Genomic Databases

The stakes have escalated dramatically. Large-scale genomic databases — the UK Biobank, the U.S. All of Us Research Program, and commercial services like 23andMe and Ancestry — are collecting genetic data from millions of people. This data is used for medical research, pharmaceutical development, and ancestry analysis.

For indigenous communities, genomic databases raise specific concerns:

• Population-level identification. Even if individual samples are de-identified, genetic patterns can identify ethnic groups and communities. Research published on "population X" may be traceable to specific indigenous communities.
• Repatriation. If a community's genetic data enters a commercial database, there may be no mechanism to retrieve or delete it — the same persistence problem Mira identified at VitraMed (Section 3.3.4), but at the scale of an entire people's genome.
• Benefit asymmetry. Pharmaceutical companies may develop treatments using indigenous genetic data and sell those treatments at prices the contributing communities cannot afford — precisely the HeLa pattern repeated at genomic scale.
• Cultural harm. Genetic findings about migration, relatedness, or disease susceptibility may contradict cultural narratives, create stigma, or be weaponized against communities in political disputes over land rights, treaty obligations, or sovereignty claims.

The CARE Principles, the First Nations principles of OCAP (Ownership, Control, Access, Possession) in Canada, and the Maori Te Mana Raraunga framework in New Zealand all represent attempts to establish indigenous governance authority over this data before it is extracted — to prevent the next HeLa case, the next Havasupai case, from occurring.

Discussion Questions

1. The consent question. Henrietta Lacks did not consent to the use of her cells. The Havasupai consented to diabetes research, and their consent was expanded beyond recognition. What would meaningful consent have looked like in each case? Is there a consent process that could adequately protect both individual autonomy and collective interests?

2. Property or rights? The Moore v. Regents decision held that patients do not have property rights over removed tissue. The rights-based framework argues for control without ownership. Which framework better protects individuals like Henrietta Lacks? Which better protects communities like the Havasupai? Can they be reconciled?

3. The scientific commons argument. Some argue that HeLa cells are too scientifically valuable to be subject to individual or family control — that they should be freely available as a scientific commons. Evaluate this argument using the commons framework from Section 3.2.4. What would Ostrom's design principles require? Does the current regime meet those requirements?

4. Contemporary genomics. A direct-to-consumer genetic testing company approaches a small indigenous community and offers free health screenings in exchange for genetic samples. The company's terms of service grant it perpetual, worldwide rights to use the genetic data for research and commercial purposes. Using the CARE Principles, evaluate this proposal. What governance mechanisms should the community demand before participating?

5. Reparation and redress. The Lacks family reached a settlement with Thermo Fisher Scientific in 2023. The Havasupai received $700,000 and the return of their blood samples. Are these outcomes adequate? What would genuine redress look like for communities whose biological data has been extracted without consent? Is financial compensation sufficient, or does justice require something more?

Your Turn: Mini-Project

Option A: CARE Principles Audit. Identify a current research project or dataset that involves indigenous or marginalized community data (examples: the UK Biobank, the Human Genome Diversity Project, the All of Us Research Program, or a local university's community health research). Using the CARE Principles as your evaluation framework, assess: Does the project provide for collective benefit? Does the community have authority to control data use? Do researchers fulfill their responsibility to the community? Are ethical obligations centered on community wellbeing? Write a two-page audit report with specific findings and recommendations.

Option B: Consent Redesign. Redesign the consent process for the Havasupai diabetes study as it should have been conducted. Your redesign should include: (1) who provides consent (individuals, tribal council, both), (2) what the consent covers and how scope limitations are enforced, (3) what mechanisms allow the tribe to monitor ongoing research, (4) how benefit sharing works, and (5) what happens if researchers want to use samples for purposes beyond the original consent. Present your redesign as a one-page protocol with explanatory notes.

Option C: Comparative Legal Analysis. Research how at least two jurisdictions handle the question of biological data ownership (e.g., the U.S. under Moore v. Regents, the EU under the GDPR's treatment of genetic data, Canada under PIPEDA and the Tri-Council Policy Statement on indigenous research, or New Zealand under the Maori Data Sovereignty framework). Write a comparative analysis (1,000-1,500 words) evaluating which framework best protects communities whose biological data has been or may be extracted for research.

References

• Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Crown Publishers, 2010.

• Harmon, Amy. "Indian Tribe Wins Fight to Limit Research of Its DNA." The New York Times, April 21, 2010.

• Garrison, Nanibaa'A. "Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research." Science, Technology, & Human Values 38, no. 2 (2013): 201-223.

• Mello, Michelle M., and Leslie E. Wolf. "The Havasupai Indian Tribe Case — Lessons for Research Involving Stored Biologic Samples." New England Journal of Medicine 363, no. 3 (2010): 204-207.

• Carroll, Stephanie Russo, et al. "The CARE Principles for Indigenous Data Governance." Data Science Journal 19, no. 1 (2020): 43.

• Research Data Alliance International Indigenous Data Sovereignty Interest Group. "CARE Principles for Indigenous Data Governance." Global Indigenous Data Alliance, 2019.

• Moore v. Regents of the University of California, 51 Cal.3d 120 (1990).

• National Institutes of Health. "HeLa Genome Data Access Agreement." NIH, August 2013.

• First Nations Information Governance Centre. Ownership, Control, Access, and Possession (OCAP): The Path to First Nations Information Governance. Ottawa: FNIGC, 2014.

• Te Mana Raraunga — Maori Data Sovereignty Network. "Principles of Maori Data Sovereignty." Auckland, 2018.

• Lacks Family and Thermo Fisher Scientific. Settlement announcement, 2023. Coverage: Nidhi Subbaraman, "Henrietta Lacks's Family Settles Lawsuit with Biotech Firm over Use of Her Cells." Nature, August 2023.