NIH, Lacks family reach understanding to share genomic data of HeLa cells
New policy requires researchers to apply for access to the full genome sequence data
8/8/2013, 1:42 p.m.
On Wednesday the National Institutes of Health announced in Nature that it has reached an understanding 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 important medical advances of the past 60 years. These include the development of modern vaccines, cancer treatments, in vitro fertilization techniques, and many others. HeLa cells are the most widely used human cell lines in existence today. Access to the whole genome data of these cells will be a valuable 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, M.D., Ph.D.
In the Nature Comment, Dr. Collins and NIH Deputy Director for Science, Outreach, and Policy Kathy L. Hudson, Ph.D., describe 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 understanding reached with the Lacks family respects their wishes to enable scientific progress while ensuring public acknowledgement of the enormous contribution made by the late Henrietta Lacks. In addition, 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, a team headed by Jay Shendure, M.D., Ph.D., of the University of Washington, Seattle, published a whole genome analysis of the CCL-2 strain of HeLa cells. That paper, which acknowledges the contributions of the Lacks family, pieced together the complex, 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.
Circumstances Leading to the NIH Policy
Earlier this year, 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.