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Genetic Privacy: We Must Learn From The Story of Henrietta Lacks

Henrietta Lacks was an African American woman whose cancer cells were taken without her consent in 1951 and became the first immortal human cell line known as HeLa cells. Her cells have been vital to countless medical advances but she and her family received no recognition or compensation. Her story highlighted the need for informed consent and privacy protections in medical research. As personalized medicine relies more on genetic data, agreements like those reached regarding HeLa genome data access can help ensure individual and family privacy while enabling important research. Lacks' case was a turning point in bioethics that established new rules around consent and privacy.

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62 views2 pages

Genetic Privacy: We Must Learn From The Story of Henrietta Lacks

Henrietta Lacks was an African American woman whose cancer cells were taken without her consent in 1951 and became the first immortal human cell line known as HeLa cells. Her cells have been vital to countless medical advances but she and her family received no recognition or compensation. Her story highlighted the need for informed consent and privacy protections in medical research. As personalized medicine relies more on genetic data, agreements like those reached regarding HeLa genome data access can help ensure individual and family privacy while enabling important research. Lacks' case was a turning point in bioethics that established new rules around consent and privacy.

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05.08.

2020 Genet c pr vacy: We must learn from the story of Henr etta Lacks | New Sc ent st

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Genetic privacy: We must learn from the story of Henrietta Lacks

HEALTH | COMMENT 1 August 2020

By Maninder Ahluwalia

A street mural memorial to Henrietta Lacks in Oak Park, Illinois


MedSci / Alamy consent-rıza olmak:agree,comply,concur,accede,yield,commit,conform,give in
anniversary-yıldönümü
Today is the 100th anniversary of the birth of Henrietta Lacks, commonly referred to as “the mother of modern medicine”.
Her cells have been used in experiments in laboratories around the world but were cultivated without her consent.
Eventually, her story led to the rewriting of the rules around ethics in healthcare. As the dawn of an era of personalised
medicine begins, the lessons from her story are more important than ever.

Lacks, an African American tobacco farmer from Virginia, was diagnosed with an aggressive form of cervical cancer in 1951.
Her doctor at Johns Hopkins Hospital in Baltimore obtained a biopsy from her cervix for diagnosis and
treatment. A small part of her tissue was taken to the tissue culture laboratory without Lacks’s knowledge or consent – a
common practice at the time.

https://www.newsc ent st.com/art cle/2250449-genet c-pr vacy-we-must-learn-from-the-story-of-henr etta-lacks/ 1/7


05.08.2020 Genet c pr vacy: We must learn from the story of Henr etta Lacks | New Sc ent st

Nobody had yet been able to keep human cells alive for a long period of time outside the body. However, George Gey, who
was head of the tissue culture laboratory, found that Lacks’s cells survived and replicated. Nearly seven decades later, these
so-called HeLa cells have now lived more than twice as long outside Lacks’s body than inside.
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Lacks died a few months after her cancer diagnosis, but her cells continue to be used for research. They have been vital to
studying diseases, including covid-19, as well as for developing vaccines and IVF, to name a few examples. They have also
become the foundation of a multibillion-dollar industry. There are more than 17,000 patents involving HeLa cells.

Henrietta Lacks. Her cells have been used all over the world in medical research
Bridgeman Images

Gey supplied the cells to scientists nationally and internationally without making a profit himself, though he gave no credit
to Lacks. Her family weren’t even aware of the existence of the cells until 1973, when researchers at John Hopkins
approached her children for blood samples to learn more about the HeLa cells.
boon-iyilik
Their mother’s cells had become a major boon to medical science and Lacks and her family did not receive any compensation
or recognition. Lacks’s story came to wider public attention in 2010 with the publishing of Rebecca Skloot’s book The
Immortal Life of Henrietta Lacks. compromise by- uzlaşmak ;
However, the controversy didn’t end there. In 2013, the European Molecular Biology Laboratory in Heidelberg,
Germany, published the HeLa genome without the consent of the Lacks family, which could have revealed private genetic
information about her descendants. Eventually, a compromise was reached called the HeLa Genome Data Use agreement.
Now, two members of the Lacks family sit on the US National Institutes of Health working group that grants permission to
access HeLa sequence information.

This sort of agreement should be a blueprint for other genetic data. We are moving towards personalised medicine becoming
the norm, in which treatments are tailored to people’s genetics. This approach has the potential to greatly improve how we
treat disease, but it also relies on researchers having access to large amounts of genetic data from different samples. With
that comes issues around privacy and consent, for both the individual and their family. In every case, there needs to be
communication and transparency between researchers and donors.

Lacks’s compelling case was a turning point in the field of bioethics. Most countries now have specific rules and laws around
informed consent and privacy to help protect patients. That is a testament to the many ways in which Lacks has transformed
modern medicine. dönüm noktası vasiyetname

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