Who knew that a few cells from a 31-year-old African American tobacco farmer could inspire a New York Times bestselling book, an upcoming movie featuring Oprah, and most importantly, 50-plus years of life-saving medical and biological research?

Yet, that's what happened with the eternally infamous Henrietta Lacks and the cervical cancer cells that took her life in 1951. Her HeLa cells became the first cancer-cell line that scientist could consistently grow in culture, leading to medical breakthroughs, like the polio vaccine, and drugs for illnesses like herpes, leukemia, influenza, hemophilia, and Parkinson's disease.

However, the Lacks family has never been directly compensated for the multimillion-dollar industry that spawned from their mother's cells, although a foundation was established to support them after the publication of The Immortal Life of Henrietta Lacks.

Moreover, they've barely had a say as to how the cells are used.

Today, the National Institutes of Health (NIH) announced an agreement with the Lacks family that will make the genomic sequence of the cells freely available, but also let her descendants decide who is allowed to perform research on the cells while receiving NIH funding.

"The generated whole-genome sequence of the HeLa cell line is a valuable resource that may lead to new biomedical insights based on research that use these cells," said Eric D. Green, director of the National Human Genome Research Institute within the NIH. "We are grateful to the Lacks' family for agreeing to a framework that makes these valuable data available to researchers."

The Path To Open Access

Two events led to this resolution. First in March, a team in Europe published results on the HeLa genome sequence and uploaded the data onto publically accessible website. This led to a public outcry from Rebecca Skloot, author of the bestselling The Immortal Life of Henrietta Lacks, in an NYT Op-Ed.

"Imagine if someone secretly sent samples of your DNA to one of many companies that promise to tell you what your genes say about you," wrote Skloot. "Now imagine they posted your genetic information online, with your name on it. Some people may not mind. But I assure you, many do: genetic information can be stigmatizing, and while it's illegal for employers or health insurance providers to discriminate based on that information, this is not true for life insurance, disability coverage or long-term care."

The European scientists later apologized and took down the data.

Second, a research group from the University of Washington conducted an investigation of why HeLa cells are so special and why they are "immortal". The research was funded by the NIH, which mandates full public disclosure of data as one of the terms of using NIH grant money. Anticipating a similar ethical conflict in this case, the NIH approached the Lacks family on forming a possible partnership that will allow future research to be public.

"The sequencing and posting of the HeLa genome brought into sharp relief important ethical and policy issues," said NIH Director Dr. Francis 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."

Sources: Hudson KL, Collins FS. Family Matters. Nature. 2013.

Adey A, Burton JN, Kitzman JO, et al. The haplotype-resolved genome and epigenome of the aneuploid HeLa cancer cell line. Nature. 2013.