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."

Rob Stein; NPR; Experts weigh medical advances in gene-editing with ethical dilemmas; NPR, March 6, 2023

Rob Stein; NPR; Experts weigh medical advances in gene-editing with ethical dilemmas

"Hundreds of scientists, doctors, bioethicists, patients, and others started gathering in London Monday for the Third International Summit on Human Genome Editing. The summit this week will debate and possibly issue recommendations about the thorny issues raised by powerful new gene-editing technologies.\

The last time the world's scientists gathered to debate the pros and cons of gene-editing — in Hong Kong in late 2018 — He Jiankui, a biophysicist and researcher at Southern University of Science and Technology in Shenzhen, China, shocked his audience with a bombshell announcement. He had created the first gene-edited babies, he told the crowd — twin girls born from embryos he had modified using the gene-editing technique CRISPR."

Your DNA is a valuable asset, so why give it to ancestry websites for free?; The Guardian, February 16, 2020

Laura Spinney, The Guardian; Your DNA is a valuable asset, so why give it to ancestry websites for free?

"The announcement by 23andMe, a company that sells home DNA testing kits, that it has sold the rights to a promising new anti-inflammatory drug to a Spanish pharmaceutical company is cause for celebration. The collected health data of 23andMe’s millions of customers have potentially produced a medical advance – the first of its kind. But a few weeks later the same company announced that it was laying off workers amid a shrinking market that its CEO put down to the public’s concerns about privacy.

These two developments are linked, because the most intimate data we can provide about ourselves – our genetic make-up – is already being harvested for ends we aren’t aware of and can’t always control. Some of them, such as better medicines, are desirable, but some of them should worry us...

These are the privacy concerns that may be behind layoffs, not only at 23andMe, but also at other DTC companies, and that we need to resolve urgently to avoid the pitfalls of genetic testingwhile [sic] realising its undoubted promise. In the meantime, we should all start reading the small print."