Lacks Family, NIH Agree to Share Genomic Data of HeLa Cells

The US National Institutes of Health (NIH; Bethesda, MD, USA) reported that it has reached an agreement with the family of the late Henrietta Lacks to allow biomedical researchers controlled access to the whole genome data of cells derived from her tumor, commonly known as HeLa cells. These cells have already been used extensively in scientific research and have helped make possible some of the most significant medical advances of the past 60 years. These include the development of cancer treatments, sophisticated vaccines, in vitro fertilization techniques, cancer treatments, and many other applications.

HeLa cells are the most widely used human cell lines currently in existence. Access to the whole genome data of these cells will be a beneficial reference tool for researchers using HeLa cells in their research. “Just like their matriarch, the Lacks family continues to have a significant impact on medical progress by providing access to an important scientific tool that researchers will use to study the cause and effect of many diseases with the goal of developing treatments,” said NIH director Francis S. Collins, MD, PhD.

The agreement was reported August 7, 2013, in the journal Nature In the Nature Comment, Dr. Collins and NIH deputy director for science, outreach, and policy Kathy L. Hudson, PhD, described their collaboration with the family to develop the new policies and also examine some of the larger questions about protection of research participants in the expanding field of genomics research. “Besides their priceless contributions to biomedical research over the past 60 years, Mrs. Lacks and her family are now serving as a catalyst for policies that advance science, build trust, and protect research participants,” said Dr. Hudson.

The agreement reached with the Lacks family respects their wishes to enable scientific advancement while ensuring public acknowledgement of the huge contribution made by the late Henrietta Lacks. Moreover, the understanding gives the Lacks family a seat at the table in reviewing applications for controlled access to Henrietta Lacks’ whole genome data.

“The HeLa genome is another chapter to the never ending story of our Henrietta Lacks,” said Lacks family spokesperson and Henrietta’s granddaughter Jeri Lacks Whye. “She is a phenomenal woman who continues to amaze the world. The Lacks family is honored to be part of an important agreement that we believe will be beneficial to everyone.”

In the same issue of Nature, researchers led by Jay Shendure, MD, PhD, from the University of Washington (Seattle, USA), published a whole genome analysis of the CCL-2 strain of HeLa cells. That article, which acknowledges the contributions of the Lacks family, patched together the complicated, rearranged genome of the HeLa cells and identified an insertion of the human papilloma virus near an oncogene that may explain the aggressiveness of Lacks’ cancer.

Earlier in 2013, researchers in Germany published a scientific paper that described the first sequence of the full HeLa genome, comparing the DNA of HeLa cell lines with that of cells from healthy human tissues. That work triggered strong reactions from researchers, patient advocates, and bioethicists who were concerned it violated the privacy of the Lacks family because of the potential to identify the family’s possible disease risk. When the Lacks family expressed concern to the German researchers about what these data might reveal about their disease risk, the data were removed from public view.

“The sequencing and posting of the HeLa genome brought into sharp relief important ethical and policy issues,” said Dr. Collins. “To understand the family’s perspectives, we met with them face to face three times over four months, and listened carefully to their concerns. Ultimately, we arrived at a path forward that respects their wishes and allows science to progress. We are indebted to the Lacks family for their generosity and thoughtfulness.”

The new controlled access policy for full genome sequence data from HeLa cells will give the Lacks family the capability to have a role in research being conducted with the HeLa genome sequences and track any subsequent findings. Biomedical researchers, under the policy, who agree to abide by terms set forth in the HeLa Genome Data Use Agreement will be able to apply to NIH for access to the full genome sequence data from HeLa cells.

Along with representatives from the medical, scientific, and bioethics communities, two representatives of the Lacks family will serve on NIH’s newly formed, six-member working group that will review proposals for access to the HeLa full genome sequence data. Furthermore, NIH-funded researchers who generate full genome sequence data from HeLa cells will be expected to deposit their data into a single database for future sharing through this process. The database study page is available online (Please see Related Links below). Other investigators will be encouraged to respect the wishes of the family and act accordingly. Importantly, all researchers who use or generate full genomic data from HeLa cells will now be asked to include in their publications an acknowledgement and expression of gratitude to the Lacks family for their contributions.

Engaging the public as a partner is critical for scientific developments. The Obama Administration is studying essential reforms to human subject protections--actions that are being fueled in part by the fact that technologic advances, particularly in computing and genomics, have made the idea of “deidentifying” a research participant’s biologic sample virtually impossible. Current policy permits the research use of specimens and generation of whole genome sequence data without the knowledge or permission of the individuals providing the sample, as long as, for example, the researcher cannot identify that individual.

Henrietta Lacks, an African-American woman who was 31 at the time of her death, was being treated for cervical cancer at Johns Hopkins Hospital (Baltimore, MD, USA) in 1951. Cells were taken from the biopsy of her tumor sample for use in research without her consent. At the time, there were no US regulations or restrictions on the use of patients’ cells in research. Although Mrs. Lacks died shortly afterwards from her aggressive disease, scientists were able to keep her cancer cells alive and replicating under laboratory conditions.

The circumstances surrounding the HeLa cell line are unique because the identities of the source of the cell line and her descendants are public and widely known. Because hers were the first human cells cultured continuously for use in research, Mrs. Lacks’ identity was revealed in a scientific journal in 1971 in reference to the landmark accomplishment.

Related Links:
US National Institutes of Health
University of Washington
HeLA database study page