In this July 30, 2013 photo made available by the National Institutes of Health, a researcher places HeLa cells in an incubator at 37 degrees Celsius at a
In this July 30, 2013 photo made available by the National Institutes of Health, a researcher places HeLa cells in an incubator at 37 degrees Celsius at a lab at the National Cancer Institute in order for them to multiply. (AP Photo/National Institutes of Health, Maggie Bartlett/)

Descendants of Henrietta Lacks, a poor black tobacco farmer whose cells were taken without permission and used since the 1950s in life-saving research, will now have a say in how that genomic information will be studied.

Any scientist using National Institutes of Health funds to study the cells' genome must apply to a panel of scientists and two of Lacks's descendants for access to the data, according to research guidelines published in the journal Nature.

The agreement was shaped after a German group published a complete genome of these cells, nicknamed HeLa, without the family's consent. It was available in a public research database for days before the family's outrage prompted researchers to remove the data. Doctors originally took the cancerous cells from Henrietta Lacks in 1951 without her consent, and decades of work have taken place without consulting the family. Her case was the subject of a best-selling book three years ago.

This 1940s photo made available by the family shows Henrietta Lacks.
This 1940s photo made available by the family shows Henrietta Lacks. (AP Photo/Lacks Family via The Henrietta Lacks Foundation/)

"We are pro-science. We want to continue our legacy," said David Lacks, Jr., Lacks' grandson, in a conference call with reporters. 'We just want to add an extra step to preserve our privacy."

The HeLa cells carry mutations that enabled them to form the aggressive cervical cancer Lacks died from later in 1951, which is why they grow prolifically in laboratories. They have contributed to numerous scientific advances, including testing the Jonas Salk polio vaccine, antidepressants and blood-pressure pills, and led to the injection techniques used for in-vitro therapy.

But parts of the genome may reveal information about her family members. David Lacks, who lives in Baltimore, had a chance to look at the genome and noted that not all the genomic information was being passed on.

"If I had this genome, I wouldn't be going bald, but that is certainly not the case," Lacks said. There's a lot of information in public about his family, he said, and though he shares only about 25 percent of the data in the genome, he's concerned about his family's privacy.

More broadly, the HeLa genome raises questions about whether it's possible to keep tissue donated in research private by stripping out the name and address from the donation, said Francis Collins, director of the NIH. The U.S. Department of Health and Human Services is preparing a new proposal for how to more effectively protect the safety and privacy of human research participants.

The terms of the agreement announced today require investigators to apply to the NIH for access to the whole-genome sequences of two HeLa cell lines. Scientists must agree to abide by the terms of the data-use agreement, and acknowledge Henrietta Lacks and her family's contribution in their work. Any new genomic information will be deposited into the protected database.

That includes a genome sequence of one of the HeLa cell lines published Wednesday in Nature, which finds few mutations occurred over years of lab work. The study also suggests that the secret behind the quick-growing cells was the insertion of human papillomavirus near a known cancer-causing gene, causing the gene to be more active than it otherwise would have been.

The publication of that research, led by Jay Shendure of the University of Washington, was briefly delayed when another group from Germany published the HeLa sequence in whole in March, without consulting the family. While the paper was held, the Lacks family and the NIH discussed how best to respect their privacy while allowing science to go forward.

Henrietta Lacks grew up in Virginia. After marrying at age 14, Lacks moved with her family to Turner Station, Md. She had five children before being diagnosed with cervical cancer. She received treatment at Johns Hopkins Hospital in Baltimore, where the cells from her cancer were removed without her permission, and eventually developed into the immortal cell line. She died in October 1951, at 31.

Her story became the subject of a book entitled "The Immortal Life of Henrietta Lacks," in 2010 by Rebecca L. Skloot.

Henrietta Lacks and her family are "among the greatest philanthropists of our time, when you consider how they've contributed to science and human health," Collins said. Committees like the one formed around HeLa cells won't be commonplace, since the identity of the family being widely known is relatively unique, and since no consent was granted for the initial cell line, he said.