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Henrietta Lacks' Family, Researchers Agree on Use of HeLa Cells

Image: Henrietta Lacks' Family, Researchers Agree on Use of HeLa Cells

By Michael Mullins   |   Thursday, 08 Aug 2013 12:26 PM

HeLa cells have been a crucial tool for researchers but also a source of angst for the family of Henrietta Lacks, the woman from whom the cells were taken without consent more than six decades earlier.

On Wednesday, the National Institutes of Health (NIH) announced a compromise over the use of genomic sequence information removed from the cells to satisfy the privacy concerns of the Lacks family and the interests of researchers, LiveScience.com reported.

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In the newly brokered deal, researchers must apply for access to the data on the HeLa genome sequence before it can be used for research purposes.

The panel that grants approval will feature members of the Lacks family, according to NIH Director Francis Collins and deputy director Kathy Hudson.

The plan was published Aug. 8 in the journal Nature.

"We hope that (the agreement), and its genesis, will spur broader discussions regarding consent for future use of biospecimens, with a goal of fostering true partnerships between researchers and research participants," Hudson and Collins told LiveScience.com.

Rebecca Dresser, a fellow at The Hastings Institute and a professor of ethics in medicine at Washington University in St. Louis, said she thought it was a fair compromise.

"The agreement represents a reasonable balance between the familys privacy interests and the open sharing that allows research to advance, Dresser told Livecience.com.

"The most interesting praiseworthy element, in my view, is that the family will be participating in the group that decides whether to grant access to the sequence data," added Dresser, who was not involved in brokering the agreement. "This will give them the control that many other members of the public say they want over how their samples are used. It is also good that they will be involved, after so many years of being neglected."

In 1951, Henrietta Lacks, then a 31-year-old African-American woman suffering from cancer, had her cells removed from a cervical tumor by a doctor at John Hopkins Hospital without her knowledge.

Now, such a removal requires the patient's consent.

Lacks' biopsy cells became the first to successfully replicate continuously in a culture.

They were subsequently referred to as "immortal" cells within the research community, and named in more than 70,000 research papers. They were used to develop the polio vaccine and were even sent into space to measure the effects of zero gravity, LiveScience.com noted.

Not long after the biopsy, Lacks died, but research on her cells continued and even involved her children. Lacks' children, like their mother, unknowingly submitted to research as well, and their medical records were published without their consent, LiveScience.com reported.

Lacks' family, who reportedly did not learn of the HeLa cells research until decades after Henrietta Lacks' death, have long fought to limit the release of information gathered from her cells, arguing that the information in the sequences has implications for her descendants.

According to Collins and Hudson, Henrietta Lacks' family unanimously agreed to the arrangement.

The HeLa code name for the cells is comprised of the first two letters of Henrietta Lacks' name.

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