Family of Henrietta Lacks, who died in 1951, will have a say in the research use of the  HeLA cancer cells

Patient privacy rights involving genetic information has gone to a new level. Pathologists and clinical laboratory managers will want to understand the legal precedents and new standards established in an unprecedented agreement between the family of a woman who died in 1951 and the growing research establishment studying her cervical cancer cells following her death.

It is a human interest story that attracted global media attention this summer. The immortal cancer cells of Henrietta Lacks—known in research laboratories as “HeLA” cells—are finally coming under legal protection after more than 60 years of travelling the globe.

It was 1951 when Lacks died of an aggressive form of cervical cancer, but her cancer cells were grown without consent of relatives and have been used worldwide in cancer research since her death. Lacks’ living relatives sought and recently obtained a legal agreement with the National Institutes of Health (NIH) to protect their DNA privacy, according to a story published in USA Today.

Agreement Gives Lacks Family a Say in Use of HeLA Cells

Obviously, Henrietta’s genes could reveal information about the health of her offspring and close relatives. Not surprisingly, those individuals wanted restrictions on who has access to this information and how it is used.

This historic agreement allows HeLA cells to continue to be used in research, but calls for involvement by the Lacks family. The agreement requires NIH-funded researchers to use a “controlled-access” database of the HeLA cell genome. Access and use of this database will be governed by a panel that includes living members of Lacks’ family. The agency also is requesting that non-NIH cancer researchers honor the agreement.

This issue came to the attention of the Lacks family because Henrietta was the subject of a best-selling book, The Immortal Life of Henrietta Lacks. The book was written by Rebecca Skloot and Oprah Winfrey is planning to make a movie about this story.

Story of Henrietta’s Cancer Cells Is Remarkable

What made Lacks’ cells unique is that—instead of dying quickly as previous cell lines had—they kept replicating at an astonishing rate. This was a first for science back in 1951 and earned these cells the label “immortal.” It also made them immensely valuable to any scientist who wanted a stable base for experiments. Since 1951, HeLA cancer cells have been used in 74,000 cancer studies and have saved countless lives.

H.Lacks

Sixty years ago Henrietta Lacks (pictured at above) was stricken with an aggressive form of cervical cancer. As was common practice then, researchers at Johns Hopkins replicated her cancer cells without her permission. The National Institutes of Health recently signed an agreement with her family that protects the privacy her and her survivors’ DNA. At right in the picture is David “Sonny” Lacks, son of Henrietta Lacks, holding a picture of his parents. (Photo copyright ConcreteLoop.com.)

As was common practice in those days, researchers at Johns Hopkins took samples of Lacks’ cancer cells without her knowledge. Now, six decades later and in the era of gene mapping, these cells became the center of debate over genetic privacy. This issue surfaced after a German research team published the gene map, or genome, of the HeLA cells in March 2013.

Privacy Breech by German Researchers Instigated NIH Agreement

This privacy breech sparked a protest by the Lacks family and Skloot over the invasion of privacy. That caused the German scientists to quickly withdraw the HeLA gene map from public view. It also sparked a collaborative effort by NIH head Francis Collins, who formerly led the public Human Genome Project that initiated the human gene mapping era, and the Lacks’ family to protect the privacy rights of genetic sample donors. This collaboration was announced in August 7, 2013 issue of the journal Nature.

“The main issue was the privacy concern,” explained Lacks’ grandson, David Lacks Jr. in the USA Today article. “Right now we are in the early stages of genomic science or genomic medicine, and we don’t know what is going to come down the road in the future.”

NIH Leader Calls for Protecting Privacy of All Future Tissue Donors

Collins has used HeLA cells in his own research. He believes additional steps must be taken to protect DNA privacy of all donor families in the future—not just those made famous by the media. “Frankly, the science has moved faster than the consent process, and maybe it is time to catch up,” Collins told USA Today reporter Dan Vergano in a phone interview.

Collins also stressed the important role HeLA cells have played in understanding what made these cancer cells so deadly to Lacks and so resilient in the research lab. He cited a related study by Andrew Adey, of the University of Washington, which was also published in Nature. Adey’s article reported on the identification and location of the human papilloma virus genes inserted into the HeLA cell gene map that caused them to become cancerous.

Meetings With Lacks Family

Collins personally met with the Lacks family in Baltimore to discuss the agreement, noted Skloot, who assisted in setting up meeting with the NIH. “That wasn’t lost on the family,” she said. “This was the first time in history that scientists really took this kind of time with the [Lacks] family in a really open and transparent way.”

The story of Henrietta Lacks and her cervical cancer cells illustrates how quickly whole human gene sequencing, combined with the increased crunch-power of computers to translate raw data of the human genome, can create information which is instantly accessible via the Internet. In turn, these changes pose medical ethics considerations for society at large.

Reminder that Clinical Laboratories Must Maintain Confidentiality

At the advent of personalized medicine, this agreement is likely to have significance for clinical laboratories and pathology groups. It signals a new level of medical ethics and is a reminder that labs should be vigilent about patient privacy when handling patient specimens and/or when involved in tissue banking activities.

—By Patricia Kirk

Related Information:

NIH makes privacy agreement with Henrietta Lacks’ family

Henrietta Lacks family, National Institutes of Health come to privacy agreement

Another Twist in the Saga of Henrietta Lacks