Henrietta Lacks.
Henrietta Lacks.

The science of whole-genome sequencing has come a long way since master x-ray crystallographer Rosalind Franklin created the first x-ray picture of DNA in 1952.

Prominent biotech companies such as Illumina and Life Technologies are pushing sequencing technology forward, enabling ever more scientific advances around the world.  With the advent of ultra-high-throughput DNA sequencing, researchers will be able to reach new heights in the areas of comparative genomics, metagenomics, systems biology, genome biology and more.

On March 11, 2013 the journal Nature accepted a paper titled The Haplotype-Resolved Genome and Epigenome of the Aneuploid HeLa Cancer Cell Line.  The University of Washington-based team behind the paper, led by Jay Shendure, had recently carried out a whole-genome sequence of the first immortal cell line and become a part of one of the most amazing developments in the history of scientific research:  the HeLa cell.

Henrietta Lacks

Henrietta Lacks, an African-American woman whose story was recently told in the best-selling book by Rebecca Skloot, never knew what a pivotal role her life and death would play in the world of science, nor the countless lives that would be touched by the medical advances made with her help.

After giving birth to her fifth child in 1951, Lacks was admitted to Johns Hopkins hospital in Baltimore due to abnormal bleeding.  Her doctor, Howard Jones, discovered a lump in her cervix; a sample was taken from the tumor for analysis and it was found that she was suffering from stage one cervical cancer.

Initially treated with radium tube inserts, Lacks was released from the hospital and ordered to come back for a follow-up.  During her subsequent radiation treatment, two samples were removed from her cervix and given to the director of the Finney-Howell Cancer Research Laboratory at Johns Hopkins University, Dr. George Gey.

Henrietta Lacks died shortly after, on October 4, 1951 at the age of 31.  An autopsy revealed that the cancer had metastasized throughout her body.


George Otto Gey and the Development of the HeLa Cell Line

Dr. George Gey.
Dr. George Gey.

Originally an instructor of zoology at the University of Pittsburgh, George Otto Gey arrived at The Johns Hopkins University in Baltimore in 1923, where he became director of the Tissue Culture Laboratory in the Department of Surgery.  He studied medicine while holding this position and was awarded the Doctor of Medicine in 1933.

When he began to study Henrietta Lacks’ cancer cells, Dr. Gey noticed that, unlike other cells cultured in the laboratory, they did not die after a few cell divisions.  He isolated one of the cells and multiplied it, and in the process created the first immortal cell line which he dubbed “HeLa.”

HeLa cells have been instrumental to many great scientific discoveries.  Jonas Salk used them to test the first polio vaccine in the 1950s; Theodore Puck and Philip Marcus were the first to successfully clone human cells using HeLa in 1955.

They have been used to study the AIDS virus, cancer, the effects of radiation, gene mapping, in vitro fertilization techniques, and the discovery of human telomerase.  The HeLa cell line appears in more than 74,000 PubMed abstracts.


Ethical Issues, Sequencing, and the NIH Agreement

When Henrietta Lacks underwent cancer treatment at Johns Hopkins in 1951, doctors were not required to inform their patients about any further use of tissue samples that might be taken during surgery.  Lacks’ identity was not revealed until 1971, when her name appeared in an article in a scientific journal in reference to the immortal cell line that bears her name.

The Lacks family wanted answers.  Lacks’ daughter Deborah began the search in 1974 when she contacted a leading geneticist who was collecting blood from Lacks family members to map HeLa genes.  He was unable to explain his research in terms understandable to a non-scientist.

The issue would not be addressed again until years later, and the family was deeply concerned that they had never once been consulted about the use of their mother’s cells.

Members of the Lacks family.
Members of the Lacks family.

Francis Collins, the director of the NIH, was very aware of the ethical issues surrounding HeLa cells and was involved in a project to reform the rules governing human subjects in scientific research.  Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, had also brought the story to a worldwide audience in 2010, and another group from the European Molecular Biology Laboratory published a paper on the HeLa genome on March 11, 2013.

When Collins learned that the University of Washington team’s paper was about to be published in Nature, he saw an opportunity.  On April 8, 2013, Collins and a group of advisors from Johns Hopkins sat down with a group of Henrietta Lacks’ children and grandchildren and held the first of three meetings to come to an agreement that, while not necessarily righting all ethical wrongs, would at least be acceptable to all parties involved.

As a result of these meetings, the NIH created a new policy for use of the HeLa cell line.  All researchers who agree to the HeLa Genome Data Use Agreement will now be able to apply to the NIH for access to the full-genome sequence of HeLa cells.

Jay Shendure.
Jay Shendure.

Two representatives of the Lacks family will serve on a six-member working group that will review all proposals for access to the data.  Also, NIH-funded researchers who generate full-genome sequence data from HeLa cells will be expected to add all their data to a single database for sharing.

Non-NIH-funded researchers will be encouraged to respect the wishes of the Lacks family and do the same, as well as include an acknowledgement to the family in their publications.

According to Dr. Collins:

“The sequencing and posting of the HeLa genome brought into sharp relief important ethical and policy issues.  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.”

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