Up Front and Personal

Identity Theft – DNA Style

by Kathleen M. Gallagher

On Aug. 7, an historic agreement was reached between the National Institutes of Health (NIH) and the family of a woman named Henrietta Lacks. It didn’t get a lot of attention, but it is critically important.

If you’ve heard of Henrietta’s name, it’s likely because of the 2010 non-fiction book, “The Immortal Life of Henrietta Lacks” by Rebecca Skloot. The book stayed on The New York Times bestseller list for two years; I highly recommend it.

It engagingly weaves the story of the life of Henrietta Lacks, a poor African-American mother of five who died in 1951 at age 31 from an aggressive form of cervical cancer. Without her knowledge or consent, some of her cancerous cells were taken by researchers at John Hopkins Hospital.They have been used for AIDS and cancer research. They helped develop drugs to successfully treat herpes, leukemia, Parkinson’s disease and influenza. They were used in the creation of the polio vaccine and other life-saving developments.

Henrietta’s family never knew. They found out more than 20 years later, long after the cells and their discoveries were making millions of dollars for scientists and companies all over the world. Earlier this year, Henrietta’s descendants were duped again, and this time there is no excuse. Researchers successfully sequenced the genome of Henrietta’s cells (called “HeLa” cells) and posted their data on the Internet. That means that all of Henrietta’s hereditary information, encoded in DNA, had been made public for all the world to see.

Imagine if someone secretly took your DNA and then processed everything it says about you and then revealed that information to the world, with your name attached. The potential damaging consequences are endless, for you and your family: denial of life insurance, refusal for admission to a long-term care facility, rejection for a life-saving organ transplant. Despite great strides in recent years, discrimination based on genetic information has not been erased from our landscape.

This most recent exploitation of Henrietta Lacks, her children, grandchildren and great grandchildren was an irresponsible invasion of medical privacy. Thankfully, the researchers who published Henrietta’s information in a public database removed it from view and apologized to her family. Now the NIH appears to have made amends to the Lacks family as well. The agreement announced in August established new rules for use of HeLa cells, which will be made available only through an application process governed by a new panel that includes two representatives of Henrietta’s family.

HeLa cells, which continue to grow and lead to more medical discoveries, are not anonymous. They belonged to a real person, Henrietta Lacks, Bible-carrying daughter, mother, sister, wife and tobacco farmer. The best thing to come of the new NIH pact is the acknowledgement of Henrietta Lacks as a human being, not just a clump of cells.

[hr]Kathleen M. Gallagher is the Director of Pro-Life Activities at the New York State Catholic Conference.[hr]