
Your body may not be the first thought you have when asked about property rights.
Maybe it should be.
The case goes back to Johns Hopkins Hospital's research in using cancer cells obtained from Henrietta Lacks in the 1950s
The family of Henrietta Lacks, a Black woman whose cervical cancer cells obtained during a tumor biopsy at Johns Hopkins Hospital in the 1950s were used in revolutionary medical research without her consent, reached a settlement with Thermo Fisher Scientific in Baltimore federal court Tuesday.
Through Ben Crump, the civil rights lawyer famous for securing the historic $27 million settlement for George Floyd’s family, Lacks’ descendants had argued in a lawsuit filed in 2021 that the Waltham, Massachusetts, biotechnology company unjustly enriched itself off the so-called HeLa cells, reaping billions of dollars from a racist medical system.Tissue harvested from the Black woman’s tumor in 1951 – when it was not illegal to do so without a patient’s permission – became the first human cells to continuously grow and reproduce in lab dishes. Lacks died of cervical cancer at just age 31 in the "colored ward" of Johns Hopkins, but the HeLa cells went on to become a cornerstone of modern medicine, enabling countless scientific and medical innovations, including the development of the polio vaccine, genetic mapping and even COVID-19 vaccines.
In a statement Tuesday, which would have been Lack’s 103rd birthday, attorneys Crump and Chris Seeger announced that "members of the family of Henrietta Lacks and Thermo Fisher have agreed to settle the litigation filed by Henrietta Lacks’ Estate, in U.S. District Court in Baltimore."
"The terms of the agreement will be confidential. The parties are pleased that they were able to find a way to resolve this matter outside of Court and will have no further comment about the settlement."While most cell samples died shortly after being removed from the body, her cells survived and thrived in laboratories. They became known as the first immortalized human cell line because scientists could cultivate them indefinitely, meaning researchers anywhere could reproduce studies using identical cells.
The remarkable science involved – and the impact on the Lacks family, some of whom had chronic illnesses and no health insurance – were documented in a bestselling book by Rebecca Skloot, "The Immortal Life of Henrietta Lacks," which was published in 2010. Oprah Winfrey portrayed her daughter in an HBO movie about the story.
Johns Hopkins said it never sold or profited from the cell lines, but many companies have patented ways of using them. In their complaint, Lacks’ descendants argued that her treatment illustrates racism in the U.S. medical system.
"The exploitation of Henrietta Lacks represents the unfortunately common struggle experienced by Black people throughout history," the lawsuit says.
Thermo Fisher argued the case should be dismissed because it was filed after the statute of limitations expired. Lawyers for the Lacks family said that shouldn’t apply because the company is continuously benefiting.
In a statement posted online, Johns Hopkins Medicine officials said they reviewed all interactions with Lacks and her family after the publication of Skloot’s book. While acknowledging an ethical responsibility, the statement said the medical system "has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line."
Though her relatives hadn’t previously received financial compensation, they reached an agreement with the National Institutes of Health in 2013 that gave them some control over how the DNA code from HeLa cells is used.
The Associated Press contributed to this report.
The FCT decided a broader DNA case recently. The issue was marketing, but again - the outcome secured privacy rights.
FTC, California Obtain Order Against DNA Testing Firm over Charges it Made a Myriad of Misrepresentations to Consumers to Entice Them to Buy Ancestry Reports
CRI Genetics will halt deceptive conduct, pay civil penalty, and give consumers a right to delete biometric information to settle the agencies’ charges
November 21, 2023
California-based CRI Genetics, LLC (CRI) will pay a $700,000 civil penalty and will be barred from a wide range of deceptive practices to settle charges from the Federal Trade Commission and the California Attorney General that the company deceived users about the accuracy of its DNA reports.
In a joint complaint filed in federal district, the agencies say that in marketing its DNA-based ancestry and information reports, CRI deceived consumers about the accuracy of its test reports compared with those of other DNA testing companies, falsely claimed to have patented an algorithm for its genetic matching process and used fake reviews and testimonials on its websites. CRI also used “dark patterns” in its online billing process to trick consumers into paying for products they did not want and did not agree to buy, according to the complaint.
“Today’s action continues the FTC’s crackdown on deceptive reviews, dark patterns, and baseless claims around algorithmic solutions,” said Samuel Levine, Director of the FTC’s Bureau of Consumer Protection. “We are proud to partner with California on this important matter and will continue to carefully scrutinize claims around biometric information technologies.”
“CRI Genetics could have found legitimate ways to market its services. Unfortunately, in its pursuit of growth and profits, the company repeatedly misled consumers. The FTC and my office took notice, we investigated, and we are delivering results today,” said California Attorney General Rob Bonta. “Our settlement not only holds CRI Genetics accountable for its past misconduct — it also aims to ensure that CRI Genetics doesn’t engage in similar misconduct going forward. I want to thank our federal counterparts at the FTC for their continued partnership and commitment to ensuring that all businesses play by the same rules.”
This action follows the Commission’s Biometric Policy Statement, which states that unsubstantiated marketing claims relating to the validity, reliability, accuracy, performance, fairness, or efficacy of technologies using biometric information violate the FTC Act.
CRI, also doing business as OmniPGX, advertises, markets, distributes, and sells DNA test kits and ancestry and health and wellness reports to consumer nationwide. Since at least 2017, CRI has marketed and sold DNA saliva swab test kits on its website, along with reports generated from the kits processed by a third-party laboratory. The reports provide consumers with information about their genetic ancestry, potential health and wellness traits and conditions, and paternity.
The complaint charges that CRI violated the FTC Act, California’s Unfair Competition Law, Business and Professions Code, and the state’s False Advertising Law, Business and Professions code in several ways. First, CRI allegedly made false claims on its websites and social media that its ancestry reports were more accurate and detailed than other major DNA testing companies, such as Ancestry DNA and 23andMe.
The agencies say that CRI also misrepresented that its ancestry testing reports would show consumers exactly where their relatives are from and when they were there dating back 50 plus generations, with an accuracy rate of more than 90 percent. The company ran ads featuring a prominent genetic scientist who developed CRI’s algorithm for matching DNA, which it falsely claimed was patented, according to the complaint.
Further, CRI posted fake reviews from supposedly “satisfied customers” on its websites and falsely claimed they only had a limited supply of the tests to entice consumers to buy them quickly. The company also published star rating reviews comparing CRI’s reports to other companies on the market on what appeared to be independent and unbiased websites, without disclosing that CRI owned the websites, which also provided links to purchase the company’s test kits.
The complaint states CRI forced consumers to click through a maze of pop-up pages on its websites, falsely promising “special rewards” and then trapped consumers by saying their order “was not complete.” CRI also deceptively told consumers that they would have a chance to review their orders before being charged for them, but instead immediately charged them, forcing consumers to return the unwanted products.
In addition to paying a $700,000 civil penalty to California, the order will prohibit CRI from making the misrepresentations alleged by the agencies and bars it from misrepresentations made in connection with the advertising, offering for sale, or sale of any DNA information testing product or service. Next, it prohibits CRI from misrepresentations related to endorsements, reviews, and ratings and requires the company to disclose any material connection with social media or other endorsers.
The order also will prohibit CRI from misrepresenting when product orders are final or complete, when charges will take place, and whether consumers can change the services they choose before being charged. CRI must also disclose the total cost of all products or services to consumers, when they will be charged, and whether they can confirm, edit, or delete products before they are charged.
In addition, the order will require CRI to obtain consumers’ consent and to describe to consumers how it may share their DNA information. The company will also be required to delete the genetic and other information of those consumers who previously received refunds and requested that their data and other personal information be deleted.
The Commission vote authorizing the staff to file the complaint and stipulated final order was 3-0. The FTC filed the complaint and proposed final order in the U.S. District Court for the District of Central District of California.
The lead staff attorney on this matter was Nadine Samter of the FTC’s Northwest Region.
NOTE: The Commission files a complaint when it has “reason to believe” that the named defendants are violating or are about to violate the law and it appears to the Commission that a proceeding is in the public interest. Stipulated final injunctions/orders have the force of law when approved and signed by the District Court judge.
The Federal Trade Commission works to promote competition and protect and educate consumers. Learn more about consumer topics at consumer.ftc.gov, or report fraud, scams, and bad business practices at ReportFraud.ftc.gov. Follow the FTC on social media, read consumer alerts and the business blog, and sign up to get the latest FTC news and alerts.
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