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The HeLa Genome—The Legacy of Henrietta Lacks to Biomedical Research


By virtue of a new NIH policy that is the result of negotiations between National Institutes of Health (NIH) leadership and members of the Lacks family, biomedical researchers have been granted controlled access to genomic data from the HeLa cell line. HeLa cells were derived from a cervical tumor biopsy taken from Henrietta Lacks in 1951. As was routine at the time, the cells were isolated and used in research without her knowledge or consent. Mrs Lacks, an African-American woman, who was 31 years old at the time of her death from cervical cancer, was being treated at Johns Hopkins Hospital, Baltimore, MD, USA. The cells collected from her tissue became the first “immortal” human cell line, surviving and replicating under laboratory conditions. Based on this landmark accomplishment of continuous human cell culture, the researchers published an article in a scientific journal in 1971 in which they revealed Mrs Lacks’ identity. However, the Lacks family only learned about the cell line in 1973, and then struggled to understand how part of their mother could continue to exist despite her death decades before.

The Immortal Life of Henrietta Lacks book coverHeLa cells are the most widely used human cell line in existence and have served as one of the truly important tools for scientists, critical for medical developments such as the polio vaccine, in vitro fertilization, and cancer treatments, among others. In March 2013 the Lacks family was thrust into the scientific spotlight again when scientists in Germany published the first sequence of the HeLa genome online, comparing the DNA of HeLa cell lines with that of cells from healthy human tissues. Objections were raised by researchers and bioethicists, among others, who were concerned that publication of the genome violated the privacy of the Lacks family because of the potential to obtain sensitive health information. As a result, the researchers removed the DNA sequence from the Web. However, access to this data would certainly provide researchers who use these cells with a valuable reference tool.

The Lacks family is happy for the cells and their genomic data to be used to enable scientific progress, but want to ensure public acknowledgement of the immense contribution made by Henrietta Lacks. The HeLa Genome Data Access Working Group, an NIH committee that instituted the controlled access policy, includes two representatives from the Lacks family.

Under the policy, the Lacks family will be involved in reviewing applications for access to the HeLa cell genome data. Researchers are also requested to disclose plans to develop intellectual property or commercial products from the data. NIH-funded researchers who generate full genome data from HeLa cells will be required to deposit the information into a single database that will be used for future sharing, accessible here. Scientists should not contact members of the Lacks family directly; they can request additional details through the working group. Publications that use HeLa genome data must now include the statement: “The genome sequence described/used in this research was derived from a HeLa cell line. Henrietta Lacks, and the HeLa cell line that was established from her tumor cells without her knowledge or consent in 1951, have made significant contributions to scientific progress and advances in human health. We are grateful to Henrietta Lacks, now deceased, and to her surviving family members for their contributions to biomedical research.”

The molecular genetics group at IDT has been continually growing HeLa cells for over 8 years and regularly uses them in experiments. The primary use of HeLa cells at IDT is for experimental design and testing of oligonucleotides, the hallmark product of IDT, as tools to alter gene expression. This work has led to the development of DsiRNA as well as miRNA inhibitors and miRNA mimics. IDT scientists continue to optimize antisense oligonucleotide designs using HeLa cells. Additionally, HeLa cells are used for testing potential nucleic acid–based therapeutics (antisense oligonucleotides, or ASOs; and anti-miRNA oligonucleotides, or AMOs) being developed at IDT for potency, longevity, specificity, toxicity, and optimal cell delivery methods (Figure 1). Other researchers have already identified AMOs that serve as effective therapeutic agents. For example, an AMO against miR-122 is currently in clinical trials being run by Santaris Pharma A/S, a Danish pharmaceutical company, to test its suitability as treatment for hepatitis C. miR-122 is a liver-specific miRNA that is required by the hepatitis C virus (HCV) for replication. Progression to therapeutic use would be of immense benefit to the estimated 3% of the world’s population infected with HCV.

HeLa Cells Being Tested for Oligonucleotide Toxicity

Figure 1.
HeLa Cells Being Tested for Oligonucleotide Toxicity.

The story of the Lacks family is told in the bestselling book, “The Immortal Life of Henrietta Lacks”, by Rebecca Skloot, and brings to the forefront the complex ethical and policy issues surrounding the use of human tissue for scientific research.

 Author: Nicola Brookman-Amissah is a Scientific Writer at IDT.