'Unique' NIH Agreement With Family Over HeLa Cell Genome

Zosia Chustecka

August 07, 2013

The National Institutes of Health (NIH) has reached a "unique" agreement with the descendants of a woman who gave the world HeLa cells, the most widely used cell line in the world. The agreement was reached after months of talks, sparked by concerns about privacy after the entire HeLa genome was published online.

HeLa cells, now ubiquitous in medical research, originated from an aggressive cervical cancer that killed Henrietta Lacks, who was being treated at the Johns Hopkins Hospital in Baltimore. In 1951, the cancer cells were removed and used without her knowledge or consent, a practice that was not unusual at that time.

The story of how HeLa cells came to be used in medical research was recounted most recently in The Immortal Life of Henrietta Lacks by Rebecca Skloot, which was published in 2010. The book became a bestseller and is being made into a movie by Oprah Winfrey's production company.

Since publication of the book, a highway marker in memory of Henrietta Lacks has been erected near her home town in Virginia.

The resultant publicity led to the Lacks family being known around the world. It is this, the lack of informed consent when the cells were removed, and the fact that HeLa cells are so widely used in medical research that called for a unique approach, according to the NIH.

"It is important to note...that we are responding to an extraordinary situation here, not setting a precedent," write Kathy Hudson, PhD, deputy director for science outreach and policy at the NIH, and NIH director Francis Collins, MD, PhD, in a comment published in the August 8 issue of Nature.

The NIH officials relate how the agreement was reached after several months of talks with members of the Lacks family, which were arranged with the help of Skloot, and with academics and leaders at Johns Hopkins.

The talks began in March 2013, after the Lacks family raised privacy concerns when the entire HeLa genome was published in G3: Genes, Genomes, Genetics.

When they heard about the family's concerns, the German scientists who published the genome removed the HeLa sequence data from public access, and offered to work with the family on a mutually acceptable solution, according to a press release from the Genetics Society of America (GSA).

As a result of the agreement between the NIH and the Lacks family, access to this genomic data is now restricted; scientists can access it through the NCBI database of genotypes and phenotypes. The final version of the paper appears in the August issue of G3.

In its press release, the GSA notes that, since their isolation in 1951, HeLa cells have been the most widely used human cell line in research, and have enabled momentous scientific breakthroughs, including the development of the polio vaccine, the understanding of the role telomerase plays in aging, and research that established human papillomavirus as a causative agent in many types of cervical cancer.

"The Lacks family has taken an important step toward ensuring that HeLa cells continue to catalyze important advances in biomedical research," said Adam Fagen, PhD, executive director of GSA.

Recalling the controversy that erupted over the publication of the genomic data, Dr. Fagen emphasized that "we all need to think about how we approach issues that arise as science moves forward, balancing privacy concerns with advances in research."

The NIH officials make a similar point. "The furor around the HeLa cells has brought the absence of consent requirements for some biospecimen research to public attention."

"Under current US federal guidelines, it is still possible to use specimens and to generate whole-genome sequencing data without the knowledge or permission of the person providing the sample, as long as the biospecimen meets the definition of 'de-identified'," they explain. However, nonidentifiability is becoming increasingly illusory because of technology advances, especially in the fields of genomics and computing, they add.

The US Department of Health and Human Services is now preparing a proposal on current regulations to protect participants in research that focuses on the issue of consent given for the use of samples in future research, they note.

"Increasingly, volunteers are being asked to give 'broad consent' for samples and data to be used in studies that may have not been conceived at the time of donation," according to an editorial that accompanies the Nature comment. "In exchange, donors should have the option to learn how their specimens are being used — and even to withdraw consent."

Nature. 2013;500:121, 141-142. Editorial, Comment

G3 (Bethesda). 2013;3:1213-1224. Abstract

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