Henrietta
Lacks was only 31 when she died of cervical cancer in 1951 in a
Baltimore hospital. Not long before her death, doctors removed some of
her tumor cells. They later discovered that the cells could thrive in a
lab, a feat no human cells had achieved before.
Soon
the cells, called HeLa cells, were being shipped from Baltimore around
the world. In the 62 years since — twice as long as Ms. Lacks’s own life
— her cells have been the subject of more than 74,000 studies, many of
which have yielded profound insights into cell biology, vaccines, in
vitro fertilization and cancer.
But
Henrietta Lacks, who was poor, black and uneducated, never consented to
her cells’ being studied. For 62 years, her family has been left out of
the decision-making about that research. Now, over the past four
months, the National institute of health has come to an agreement with the Lacks family to grant them some control over how Henrietta Lacks’s genome is used.
“In
20 years at N.I.H., I can’t remember something like this,” Dr. Francis
S. Collins, the institute’s director, said in an interview.
The
agreement, which does not provide the family with the right to
potential earnings from future research on Ms. Lacks’s genome, was
prompted by two projects to sequence the genome of HeLa cells, the
second of which was published Wednesday in the journal Nature.
Though
the agreement, which was announced Wednesday, is a milestone in the
saga of Ms. Lacks, it also draws attention to a lack of policies to
balance the benefits of studying genomes with the risks to the privacy
of people whose genomes are studied — as well as their relatives.
As the journalist Rebecca slooks
recounted in her 2010 best-seller, “The Immortal Life of Henrietta
Lacks,” 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 Ms.
Lacks’s family learned that their mother’s cells were, in effect,
scattered across the planet.
Some
members of the family tried to find more information. Some wanted a
portion of the profits that companies were earning from research on HeLa
cells. They were largely ignored for years.
Ms. Lacks is survived by children, grandchildren and great-grandchildren, many still living in or around Baltimore.
And this March they experienced an intense feeling of déjà vu.
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 made aware of neither project
.
.
“I
said, ‘No, this is not right,’ ” Jeri Lacks Whye, one of Henrietta
Lacks’s grandchildren, said in an interview. “They should not have this
up unless they have consent from the family.”
Officials
at the National Institutes of Health now acknowledge that they should
have contacted the Lacks family when researchers first applied for a
grant to sequence the HeLa genome. They belatedly addressed the problem
after the family raised its objections.
The
European researchers took down their public data, and the publication
of the University of Washington paper was stopped. Dr. Collins and Kathy
L. Hudson, the National Institutes of Health deputy director for
science, outreach and policy, made three trips to Baltimore to meet with
the Lacks family to discuss the research and what to do about it.
“The
biggest concern was privacy — what information was actually going to be
out there about our grandmother, and what information they can obtain
from her sequencing that will tell them about her children and
grandchildren and going down the line,” Ms. Lacks Whye said.
Photo