15 August 2020 | New Scientist | 23T
HIS month 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 Maryland 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.
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.
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
MIwell as for developing vaccines
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They have also become the
foundation of a multibillion-
dollar industry. There are more
than 17,000 patents involving
HeLa cells.
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 Johns Hopkins approached her
children for blood samples tolearn more about the HeLa cells.
Their mother’s cells had become
a major boon to medical science
and Lacks and her family didn’t
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.
However, the controversy didn’t
end there. In 2013, the European
Molecular Biology Laboratory in
Heidelberg, Germany, published
the HeLa genome without theconsent 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
come 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. ❚Protecting genetic data
Henrietta Lacks’s cells were used for research without her consent.
We still have much to learn f rom her stor y, says Maninder AhluwaliaManinder Ahluwalia is
a lecturer in biomedical
sciences at Cardiff
Metropolitan University, UK