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Immortal gift to the world from a little-known mother

Legacy lives on: Henrietta Lacks

In 1951, a seriously ill young Black woman, Henrietta Lacks, from a small town named Turner Station (now Dundalk), Baltimore County, Maryland, went to Johns Hopkins, one of few hospitals in the area that provided treatment to the Black community.

She was admitted to the free ward for individuals having no health insurance.

There, in assessing her medical condition, biopsies of suspected tumour cells were extracted for laboratory testing – without her permission or notification to her family – in what was then (70 years ago) considered a routine diagnostic medical procedure.

Her prognosis: advanced cervical cancer – that even today, is the fourth largest cause of cancer in women and still an unacceptable death rate among women in low and middle-income countries and communities.

She underwent terribly painful and ultimately unsuccessful treatment, dying several months later leaving five young children, and her grieving husband.

Ms Lacks was buried in an unmarked grave in the family cemetery, Lackstown, Halifax County, Virginia.

But her cells lived on in a vitro culture, HeLa, named after the first two letters of Henrietta’s first and last name. It was an incredible scientific phenomenon (humans cells generally survived only a few days) with profound future benefits.

As was also common practice, the HeLa cells were initially freely shared by medical researchers at Johns Hopkins and disseminated to numerous other medical/biological researchers. While John Hopkins did not ever profit or sell HeLa cells, companies benefiting from the use of HeLa cells did and continue to sell end products round the world, with a value estimated in billions of dollars.

For more than 20 years, her death went unnoticed, except by her bereft family and the medical research world.

Her husband and family did not know about, nor had any idea of the impact of the HeLa cells, nor were they ever contacted for consent to sequence the HeLa genome or provided financial benefits.

They still only had limited access to healthcare and no insurance.

It was not until 1973, when a scientist called to ask for blood samples to study the genes her children had inherited from her, that the Lacks family learnt that their mother’s cells were, in effect, scattered across the planet.

Some members of the family tried to find more information, or wanted a portion of the profits that companies were earning from research on HeLa cells. They were largely ignored for years.

In 2011, The Immortal Life of Henrietta Lacks by Rebecca Skloot was published.

Ms Skloot had been fascinated by the HeLa cells contribution to science and their origin since her college days. In her scientific writer profession, she spent more than ten years of research into Henrietta Lacks’ life, and working with the Lacks family as they discovered the history and personality of a mother they had known so very briefly in their lives.

Significant time had now passed since their mother’s/grandmother’s death, but the debate on personal privacy, decision-making, consent, ownership of one’s body, family impact, ethical, legal, and numerous other issues has magnified this entire case for reconsideration on a global scale.

The Lacks family lobbied persistently for their right to be part of the decision-making process in sharing HeLa cells.

In spring 2013, scientists at the European Molecular Biology Laboratory published the genome of a line of HeLa cells, making it publicly available for downloading. Another study, sponsored by the National Institutes of Health at the University of Washington, was about to be published in Nature.

The Lacks family was not made aware of either project.

The family objected with serious concerns about the family’s privacy and the lack of their consent; subsequently, both sets of researchers retracted their publications.

The NIH and the Lacks family came to an agreement about recognition, access and publications with a working group called the HeLa Genome Data Access with two participating members of the Lacks family; however, the agreement did not include any compensation from commercial HeLa genome products

Continuing their quest for justice and reparations, the family filed a civil lawsuit against ThermoFisher Scientific, the “world leader in serving science, with annual revenue of approximately $40 billion”. Arguing the biotechnology company has made millions in “unjust enrichment”, the Lacks took the case before a federal judge in Baltimore on May 17, 2022, and are now awaiting a ruling.

That ruling came in February 2023; the lawsuit will go to trial.

Readers, I have deliberately limited my narrative of this young woman’s short life and tragic aftermath in order to include links to Henrietta’s family and the scientific discoveries from the HeLa genome.

The Henrietta Lacks story is a factual, immortal memory of HeLa and its living presence in our lives.

We can only conjecture just how many millions, possibly billions of us have benefited from medical and biological research in our own health issues and wellbeing.

Remember your mothers: what they have done for you, gave up for you, provided an example for you, protected you, cared for you and then sent you off like a kite flying high, cutting those strings to allow you to make your way in the great, wide world.

Significant Research Advances Enabled by HeLa Cells from the US National Institute of Health

1952 – HeLa cells grow continuously in a laboratory for the first time – due to a cancer mutation called TP53 immortally.

1953 – HeLa, ground work for a polio vaccine

1956 – HeLa, Effects of X-rays on Human Cells

– HeLa Developing Cancer Research Methods that tests whether a cell line is cancerous or not, still in use today.

1964 — HeLa, in the very first capsules, explores outer space

— HeLa, Treatments for Sickle Cell Anemia and Blood Cancer Disorders

1973 — HeLa, Determining How Salmonella Causes Infection

1985 – HeLa, Making Strides Against Cervical Cancer and development of one of the first anticancer vaccines

– HeLa, Slowing Cancer Growth in ovarian, lung, and cervical cancers

1988 — HeLa facilitates drug development to limit the spread of HIV

1989 — Learning how cells age

1993 — HeLa used in tuberculosis research

2001 — HeLa used in innovating single cell imaging

And there is so much more, cloning, gene mapping, IVF infertility research, etc explored in more than 110,000 research papers and ongoing research.

Other sources

Lacks family website

Henrietta Lacks: The Untold Storyby grandson Ron Lacks

John Hopkins Medicine: Honouring The Legacy of Henrietta Lacks

Wikipedia: Henrietta Lacks

CBS: “The Immortal Henrietta Lacks”

Henrietta Lacks Foundation website

WHO News: “Henrietta Lacks’ family appointed World Health Organisation Goodwill Ambassadors for Cervical Cancer Elimination”

Martha Harris Myron is a native Bermuda islander with US connections, author, YouTube creator of The Bermuda Island Financial Literacy Perspectives Channel and a retired qualified international financial planner. Contact: martha.myron@gmail.com

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Published May 13, 2023 at 7:54 am (Updated May 13, 2023 at 7:38 am)

Immortal gift to the world from a little-known mother

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