Medical Apartheid, 2026: Henrietta Lacks, Three HeLa Settlements and the Consent Question

Khemetic News Network | Health, Science & Accountability Desk | October 30, 2026

Medical Apartheid: The Continuing Investigation — Weekly installment

Three pharmaceutical and biotechnology companies have reached confidential settlements with the estate of Henrietta Lacks, the Black Baltimore-area patient whose cervical tumor cells were taken without her knowledge or consent in 1951. The settlements—with Thermo Fisher Scientific in 2023, Novartis in February 2026 and Viatris in March 2026—mark important legal developments, but they do not disclose compensation amounts or establish judicial findings of liability. A separate lawsuit against Ultragenyx Pharmaceutical remained active in the latest docket information reviewed for this report. The dispute asks a question that reaches far beyond one family: who gets to decide how human tissue and genetic information are used, and who benefits? Reuters, March 12, 2026; Ultragenyx case docket, updated August 30, 2026.

From a segregated hospital ward to a global research resource

In 1951, Lacks sought treatment for cervical cancer at Johns Hopkins Hospital. Tissue from her tumor was used to establish the HeLa cell line, which could be grown repeatedly in laboratories and became central to biomedical research. The tissue was obtained without her knowledge or consent. The institution acknowledges the absence of consent and says that it never sold or profited from distributing HeLa cells, which it shared with researchers. It also acknowledges that it should have done more to inform and work with the family. These are distinct facts: the original collection, subsequent scientific distribution, and later corporate commercialization should not be conflated. Johns Hopkins institutional statement; NIH history and agreement.

Harriet A. Washington’s Medical Apartheid (2006) places Black Americans’ experiences of medical experimentation, unequal power and distrust within a longer history. That framework helps explain why the Lacks story resonates. It does not mean that every modern use of stored human tissue is unlawful or that today’s consent rules are identical to those of 1951. The evidence and governing law must be assessed separately for each case. Book overview and historical context.

The 2013 family agreement and the 2024 update

The Lacks family’s concerns about privacy sharpened in 2013 after researchers released HeLa whole-genome sequence data. The National Institutes of Health and family representatives established a controlled-access process for certain HeLa whole-genome data. In May 2024, NIH issued updated guidance for NIH-supported researchers who generate or request access to those data. The NIH working group includes Lacks family representatives, reviews requests and advises on access; the NIH Director makes the final access decision. Crucially, this agreement concerns specified genomic data—not ownership of every HeLa cell or a universal ban on all HeLa research. NIH Notice NOT-OD-24-098, May 24, 2024; NIH working-group record.

What the courts have—and have not—decided

In August 2023, the estate and Thermo Fisher Scientific announced a confidential settlement of litigation alleging unjust enrichment from commercial use of HeLa cells. The settlement did not produce a public trial verdict. In February 2026, Novartis and the estate settled a related case, with the claims against Novartis dismissed with prejudice. In March 2026, the estate and Viatris resolved the remaining related claims, including those involving its subsidiary Mylan Pharmaceuticals; the March 11 dismissal was with prejudice. These settlements are documented outcomes, not convictions or court determinations that each company’s alleged conduct was proved. Associated Press report, February 28, 2026; Maryland Daily Record, March 16, 2026.

The estate also sued Ultragenyx Pharmaceutical in August 2023. A federal judge’s March 3, 2025 opinion allowed the unjust-enrichment claim to proceed past a motion challenging the pleadings. That ruling did not decide whether the company is liable. Ultragenyx has denied wrongdoing and said it has not sold products made from HeLa cells or profited from them. The docket was listed active with an August 2026 scheduling modification; we have not independently verified every subsequent filing through October 30. Federal court opinion, March 3, 2025; Reuters on Ultragenyx response, February 24, 2026; Docket listing.

Registry A — Medical Accountability Registry

Purpose: record documented conduct, allegations, findings and precise legal status. Inclusion is not a declaration of criminal guilt or professional misconduct. This week’s entries concern institutions and companies; no individual physician or nurse is added without adequate case-specific documentation.

• Johns Hopkins Hospital / Johns Hopkins Medicine — historical institution, 1951. Documented: tissue obtained during Lacks’s treatment and used for research without her knowledge or consent. Institutional position: the practice was lawful and common in that era, and Hopkins says it did not sell or profit from the cell line; it acknowledges shortcomings in communicating with the family. Status: historical ethical accountability, not a criminal conviction or a judgment of civil liability in the corporate cases described here. Institutional statement.
• Thermo Fisher Scientific — commercial research supplier; suit filed 2021, settled August 2023. Estate alleged unjust enrichment from HeLa commercialization. Status: confidential civil settlement; no public adjudication of liability in the resolved case. 2023 settlement reporting.
• Novartis Pharmaceuticals and related named entities — pharmaceutical company; 2024–2026. Estate alleged unjust enrichment from commercial uses connected to HeLa cells. Status: February 2026 confidential settlement and dismissal with prejudice; no judicial finding that the allegations were proved. Associated Press report.
• Viatris and Mylan Pharmaceuticals — pharmaceutical companies; 2024–2026. Estate alleged unjust enrichment connected to HeLa-based research. Status: confidential March 2026 settlement and dismissal with prejudice; allegations not adjudicated. Reuters.
• Ultragenyx Pharmaceutical — pharmaceutical company; suit filed August 2023. Estate alleges unjust enrichment. Company denies wrongdoing. Status: civil case active in latest docket reviewed (updated August 30, 2026); 2025 ruling permitting litigation to continue is not a finding of liability. Court opinion; Docket.

Registry B — Whistleblower and Witness Registry

Purpose: recognize people who exposed, documented, testified about or advocated regarding the record. These people are not placed in Registry A because of their research, advocacy or connection to an institution. No one listed below is described as an eyewitness to the 1951 tissue collection.

• Jeri Lacks-Whye — family advocate and NIH data-access participant, 2013 onward. Publicly voiced family privacy and communication concerns after genomic information became available and participated in the NIH-family engagement. Evidence: 2013 Associated Press interview; NIH working-group roster. Role: family witness and advocate, not accused participant.
• David Lacks Jr. — family representative and genomic-data governance participant, 2013 onward. Explained family concerns about privacy and the desire for communication with researchers. Evidence: NIH/NCI interview; NIH roster. Role: family witness and advocate, not accused participant.
• Rebecca Skloot — independent journalist and author, research published 2010. Investigated and documented Lacks’s story and the family’s experience through years of reporting in The Immortal Life of Henrietta Lacks. Evidence: Duke University account of her 2010 presentation. Role: documentarian, not a participant in the original tissue collection.
• Ron L. Lacks — estate personal representative, named in 2023 litigation. Pursued the estate’s civil unjust-enrichment claim through the courts. Evidence: 2025 judicial opinion identifying the plaintiff and role. Role: legal advocate and public-record witness, not an eyewitness to the 1951 event.

Know Your Medical Rights — practical steps

1. Ask what is being collected and why. Before agreeing to a clinical procedure or a research study, ask whether samples will be stored, sequenced, shared with commercial partners or used in future research; whether participation is voluntary; and whether withdrawal is possible. Important legal distinction: consent rules differ for treatment, FDA-regulated trials and research with identifiable or de-identified leftover specimens. Federal rules may permit some secondary research without new individual consent, depending on the facts, IRB decisions and applicable law. HHS guidance on biospecimens and consent.

2. Request your records in writing. For most U.S. HIPAA-covered providers and health plans, you can request copies of records in the designated record set, which may include consent forms, laboratory reports and billing information. Generally, the entity must act within 30 calendar days, with one written extension of up to 30 additional days when permitted. Keep a copy of the request and any response. HIPAA access rights have exceptions and do not necessarily establish ownership of stored tissue. HHS right-of-access explanation.

3. Report privacy or discrimination concerns. For a suspected HIPAA violation, file with the HHS Office for Civil Rights; for covered healthcare discrimination, use the civil-rights complaint process. OCR complaints generally must be filed within 180 days of learning of the event, subject to possible good-cause extension. For a clinical study, contact its institutional review board or research-compliance office; state medical boards and licensing agencies handle other professional complaints. Federal and state coverage, deadlines and remedies vary.

4. Preserve evidence without exposing private health information. Save dated consent forms, appointment summaries, correspondence and complaint confirmations. Do not publish another patient’s medical records or identifying testimony without appropriate permission. If immediate harm is involved, seek clinical care promptly; a complaint process is not emergency medical treatment.

Dated evidence log and source archive

• 1951: Lacks’s tissue collected during cervical-cancer care without her knowledge or consent; Johns Hopkins and NIH historical records.
• August 7, 2013: NIH-Lacks Family agreement established; NIH notice.
• August 2023: Thermo Fisher civil settlement announced; reporting.
• May 24, 2024: NIH updated HeLa genome data guidance; official notice.
• March 3, 2025: Court allowed Ultragenyx case to continue, without ruling on ultimate liability; judicial opinion.
• February–March 2026: Novartis and Viatris settlements; AP and Maryland Daily Record.
• August 30, 2026: Latest accessible Ultragenyx docket update reviewed; case record. Later filings may exist.
• October 30, 2026: KNN editorial source review and registry status check. Historical framework: Harriet A. Washington, Medical Apartheid.

Editorial methodology and corrections: This installment is based on public institutional records, judicial materials and attributed reporting. It includes no private patient records and no unpublished identifying testimony. The previously mentioned NewsBreak article was excluded because its contents could not be independently verified. KNN did not conduct fresh interviews or send direct requests for comment for this desk review; where available, the institutional and corporate positions are represented from published sources. A confidential settlement is not an admission of wrongdoing. Any new docket filing, documented correction or substantive response should be incorporated into a dated update.

Related KNN reporting: Medical Apartheid, Today: Consent, Detention Care and the Evidence Behind Accountability (October 23, 2026).

Image: Illustrative laboratory microscope photograph by Ousa Chea / Unsplash; it does not depict Henrietta Lacks or HeLa cells.