Where research, privacy collide

Henrietta Lacks was born in Roanoke in 1920 and died 31 years later in Baltimore, a low-income woman taken by an aggressive form of cervical cancer.

Her life and death would go largely unremarked had a doctor not taken cancer cells from her without her or her family’s knowledge, much less consent — typical of the time. It would be two more years before scientists even knew of the structure of DNA and the genetic information it held.

Lacks’ cells became the first human cells grown outside the body that could be reproduced endlessly — “immortal” cells, a medical breakthough by Dr. George Gey, a Johns Hopkins researcher. What he called HeLa cells became the key to knowledge about viruses and cancer that unlocked giant advances in prevention and treatment.

A 2010 best-seller, “The Immortal Life of Henrietta Lacks,” made her name and her family’s quest for privacy known the world over. Last week, the National Institutes of Health agreed that two family members will sit on a six-person committee that will control access to the HeLa cell line.

That resolves the family’s major wish, but it doesn’t resolve ethical issues still evolving for society at large as medical research continues to discover knowledge about human DNA and applications for using it.

Who should have control over an individual’s genome or body tissues — over who can access it and how it can be used? Here, too, Henrietta Lacks might point the way.

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