Roland Pattillo helped keep Henrietta Lacks' story alive. It's key to his legacy; NPR, November 14, 2023

 Walter Ray Watson, NPR; Roland Pattillo helped keep Henrietta Lacks' story alive. It's key to his legacy

"Dr. Roland Pattillo and his wife Pat O'Flynn Pattillo paid for Henrietta Lacks' permanent headstone, a smooth, substantial block of pink granite. It sits in the shape of a hardcover book...

Pattillo, an African American oncologist, stem cell researcher and professor, died in May at age 89. His death went largely unreported. The New York Times ran an obituary last month. The Nation published the news in September...

He protected and elevated Lacks' memory for decades. A Louisiana native, Dr. Pattillo is often described as a quiet, determined man, and a major reason why millions know Henrietta Lacks' story.

He befriended the Lacks family and protected them from reporters and other people. He was aware of the HeLa cell line story, the medical discovery that Henrietta Lacks' cancer cells successfully grew outside her body, but he learned more about the donor when he worked with biologist George Gey, his mentor at Johns Hopkins. Gey was responsible for harvesting her biopsied cancer cells and successfully growing them in culture, the first human cells to do so. They were put to use for medical research in labs around the world...

Henrietta Lacks left behind five young children in 1951.

She was treated at Johns Hopkins, a Baltimore charity hospital that cared for Black patients during the Jim Crow era. Her tumor cells were taken without her knowledge. Her cells became the first successful "immortal" cell line, grown outside her body and used for medical research. They have been instrumental in breakthroughs ever since.

Patients rights and the rules governing them were not like today.

HeLa cells were used to understand how the polio virus infected human beings. A vaccine was developed as a result. More recently, they played a significant role in COVID-19 vaccines.

Pat Pattillo says her husband wanted to share how Lacks' gift benefitted humanity since her death at age 31. But he also hoped to extend empathy for the family she left behind...

Skloot says she and Pattillo first had a mentor and mentee relationship, but it blossomed into a collegial one, especially when they formed the Henrietta Lacks Foundation.

"So, it provides financial support for people who made important contributions to science without their knowledge or consent," she says. "And their descendants, specifically people who were used in historic research studies like the Tuskegee syphilis studies, the Holmes Burke prison studies, and Henrietta Lacks family.""

Who owns your cells? Legacy of Henrietta Lacks raises ethical questions about profits from medical research; Cleveland.com, August 18, 2023

Gretchen Cuda Kroen, cleveland.com; Who owns your cells? Legacy of Henrietta Lacks raises ethical questions about profits from medical research

"While the legal victory may have given the family some closure, it has raised concerns for bioethicists in Cleveland and elsewhere.

The case raises important questions about owning one’s own body; whether individuals are entitled to a share of the profits from medical discoveries derived from research on their own cells, organs and genetic material.

But it also offers a tremendous opportunity to not only acknowledge the ethical failures of the past and the seeds of mistrust they have sown, but to guide society toward building better, more trustworthy medical institutions, said Aaron Goldenberg, who directs the Bioethics Center for Community Health and Genomic Equity (CHANGE) at Case Western Reserve University."

Henrietta Lacks' descendants reach a settlement over the use of her 'stolen' cells; NPR, August 1, 2023

Joe Hernandez,  NPR; Henrietta Lacks' descendants reach a settlement over the use of her 'stolen' cells

"The family of Henrietta Lacks has reached a settlement with a science and technology company that it says used cells taken without Lacks' consent in the 1950s to develop products it later sold for a profit."

Scientists Raise Concerns About Revisions to Human Research Regulations; The Scientist, February 19, 2019

Katarina Zimmer, The Scientist; Scientists Raise Concerns About Revisions to Human Research Regulations

"When Henrietta Lacks visited the Johns Hopkins Medical Center in the 1950s to be treated for cervical cancer, she had no idea that some of her cancer cells would be used to create one of the most scientifically valuable and financially profitable cell lines that is used in labs today. Nor was she asked for permission.

Lacks’s experience has become nationally acknowledged as a shameful episode in the history of biomedical research in the US—particularly after the publication of a popular book about Lacks and her family—and forced the scientific community to consider how to conduct ethical research with human samples. The case was one of the reasons for a heated debate during a recent, six-year-long process of revising the Common Rule, a package of regulations adopted in the 1990s intended to ensure that all federally funded research conducted on human subjects is done ethically.

The revisions, enacted last month, are an attempt to strike a better balance between patients’ need for privacy and the benefits of using their tissue for research. In a paper published January 31 in JAMA Oncology, a group of clinicians and ethicists from the University of Michigan and the University of Pennsylvania argue that the revisions could have unintended consequences for research with various types of biospecimens, and propose that regulators should consider them differently when creating research protections."

When Scientists Develop Products From Personal Medical Data, Who Gets To Profit?; NPR, May 31, 2018

Richard Harris, NPR; When Scientists Develop Products From Personal Medical Data, Who Gets To Profit?

"If you go to the hospital for medical treatment and scientists there decide to use your medical information to create a commercial product, are you owed anything as part of the bargain?

That's one of the questions that is emerging as researchers and product developers eagerly delve into digital data such as CT scans and electronic medical records, making artificial-intelligence products that are helping doctors to manage information and even to help them diagnose disease.

This issue cropped up in 2016, when Google DeepMind decided to test an app that measures kidney health by gathering 1.6 million records from patients at the Royal Free Hospital in London. The British authorities found this broke patient privacy laws in the United Kingdom. (Update on June 1 at 9:30 a.m. ET: DeepMind says it was able to deploy its app despite the violation.)

But the rules are different in the United States."

Scientists Needn't Get A Patient's Consent To Study Blood Or DNA; NPR, 1/18/17

Rob Stein, NPR; 

Scientists Needn't Get A Patient's Consent To Study Blood Or DNA

"The Obama administration has dropped a controversial proposal that would have required all federally funded scientists to get permission from patients before using their cells, blood, tissue or DNA for research.

The proposal was eliminated from the final revision of the Common Rule, which was published in the Federal Register Wednesday. The rule is a complex set of regulations designed to make sure federally funded research on human subjects is conducted ethically. The revision to the regulations, set to go into effect in 2018, marks the first time the rule has been updated in 26 years.

The initial proposal that researchers be required to get permission before using a patient's tissue sample for research came out of the desire to avoid repeating what happened to Henrietta Lacks, an American who died of cervical cancer in 1951. Some of the cells from Lacks' cancer were kept alive for decades, used in research and for commercial purposes without her consent or her family's knowledge.

But scientists have argued that the mandate for consent in the initial Obama proposal was unnecessary and would hinder crucial research...

The final decision was welcomed by scientists and universities."

[Podcast] Tracing The 'Immortal' Cells Of Henrietta Lacks; NPR's Fresh Air, 3/18/11

[Podcast] [Interview originally broadcast on February 2, 2010.] NPR's Fresh Air; Tracing The 'Immortal' Cells Of Henrietta Lacks:

"For the past 60 years Lacks' cells have been cultured and used in experiments ranging from determining the long-term effects of radiation to testing the live polio vaccine. Her cells were commercialized and have generated millions of dollars in profit for the medical researchers who patented her tissue.

Lacks' family, however, didn't know the cell cultures existed until more than 20 years after her death."