Would you want your cells to live on beyond your death without your consent? How would your children and grandchildren feel knowing bits of you are in labs all over the world without you or them having a say? Studied and examined. Your full genome posted in a journal for everyone to access, even though you have dozens of descendants who carry your genes.
Henrietta Lacks’ gravestone is inscribed with “Her immortal cells will continue to help mankind forever”. Born in 1920, Henrietta was a religious Black woman who liked to paint her nails and took pride in herself.
In 1951, aged 31, Henrietta experienced unusual bleeding. It’s 1951 in Baltimore and Jim Crow laws are in full force, so she had to turn for help from doctors at a segregated John’s Hopkins hospital. She was given an aggressive cervical cancer diagnosis. But, without her knowledge or consent, the doctors gave the cervical samples they took from her to a researcher they had a deal with at the time.
Up until 1951, scientists were not able to propagate and reproduce human cells on Petri dishes. Henrietta’s cells changed that. She passed away a few months after her diagnosis, yet her cells lived on. Parts of her, without her knowing, lived on. Henrietta Lacks’ cells became known as the HeLa cell line, taking on the first two letters of her first and last names.
Her family was never compensated for the lack of consent and the profits made off the back of her cells
Her immortal cell line not only lived outside her body but thrived. They were, and are, able to reproduce themselves every one or two days. It wasn’t until 1973 when researchers approached her five children to learn more about her immortal cells that her family realized for the first time, their mother lives on. A 100 years from her birth, Henrietta’s cells are still here with us today.
Two Nobel Prizes; 17,000 patents; the development of IVF (which gives rise to four million births per year in the US alone); successes for many biotech companies leading in cancer, immunology, and infectious disease research; and even preparing COVID-19 vaccines. These are just a few of the contributions her cells have made in science.
Henrietta’s cells have in one way or another touched the lives of anyone who has needed medical treatment in the modern-day. That makes all of us. Yet her family was never compensated for the lack of consent and the profits made off the back of her cells.
It was only in 2010 that her story was made truly public with the publishing of Rebecca Skloot’s bestselling book ‘The Immortal Life of Henrietta Lacks’. Even so, the controversy did not cease to exist as a lab in Germany decided to publish the genome of Henrietta’s cells without the consent of her living family in 2013.
HeLa cells are undoubtedly the “mother of modern medicine”
The backlash from the scientific community and her family eventually resulted in the retraction of the article. After this fiasco, two members of the Lacks family now sit on the US National Institute of Health working group which grants permission to access HeLa genetic sequence information.
Henrietta Lacks, without realizing, helped form the bioethical sphere as well as modern medicine. Thanks to the push back from her family and bioethicists, now, unlike in 1951, it is unlawful to take a biological specimen for research even if the specimen is deidentified from the person it came from. Some are taking steps to correct wrongs such as the University of California San Diego and a UK-based biomedical company announcing donations to the Henrietta Lacks foundation. A foundation that awards grants to Lack’s descendants and family members of others whose bodies have been used without consent.
HeLa cells are undoubtedly the “mother of modern medicine”. Henrietta’s unknowing contribution led to the development of our current bioethical sphere and laws which will only become more important as scientists progress in the field. We are headed in the right direction, but Henrietta Lacks and her family deserved a better starting point to begin with. #HELA100
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