Scientific breakthroughs vs. your privacy -- lessons from Henrietta Lacks' saga

When Henrietta Lacks died of cervical cancer at Johns Hopkins hospital in 1951, her cancer cells continued to grow outside her body, the first successful human clone. These cells, known as “HELA cells,” went on to become the most useful cells in the history of science, leading to cancer cures, treatments for HIV and parkinsonism, advances in vitro fertilization, and lifesaving vaccines for polio and influenza. They were even studied in outer space, and were used in over 74,000 scientific publications.

But all this groundbreaking work proceeded without any consent or involvement of the Lacks family.

An eye-opening and extremely popular book, “The Immortal Life of Henrietta Lacks,” by Rebecca Skloot, first brought this injustice to public attention in 2010. The Henrietta Lacks case added to our sordid history in America of experimentation without consent on the poor and African-Americans.


Since then, HELA cells have become the first cells to be genetically sequenced and mapped. This advance is already proving extremely important, as it has led to research revealing how the Human Papilloma Virus (HPV) attaches to cells and converts them to malignant, rapidly growing cells. This finding will likely lead to exciting new cancer cures.

When the Lacks family became aware that Henrietta’s genetic map was being made public and published by scientists on the Internet – including revelations about some genes they themselves had inherited  --  they met with the National Institutes of Health to see if they could finally gain some control over Henrietta’s cells and genes.

The Lacks’ concerns are some of the same concerns we may all soon face as our cells are genetically mapped. Our own specific genetic signatures could become public knowledge without our permission.

"We’ve got to maintain some kind of control over the information that's out there because we don't know what damage it could do,” David Lacks Jr., Henrietta’s grandson pointed out to me in an interview. “Nobody's concerned about privacy until the lack of privacy comes back and burns you.”

The National Institutes of Health brokered a deal with the Lacks family earlier this month which will allow them to have a say in how the important cells are used going forward.

Dr. Francis Collins, Director of the National Institutes of Health and a former head of the Human Genome Project, believes that here in America we are much more sensitive to personal rights than we were 62 years ago and that this important step in maintaining personal rights can be done without slowing the wheels of science.

Collins told me in an interview, “Here at NIH we have been deliberating for quite a few years about what's the appropriate way to balance two compelling principles, namely [that] individuals should have the opportunity to decide how their own biological specimens are going to be used and what privacy protection they need -- that is one principle, and the other is that science advances for public benefit [can take place] more quickly if data is accessible and you don't put up unnecessary barriers.”

What will this mean for the rest of us? Collins believes that each case is different but that the Lacks case sets an important precedent for the rest of us in terms of controlling our genes and where our personal information is published.

Says author Rebecca Skloot, who also spoke with me in an interview, “Some people feel their soul is in these cells. It’s a very personal thing and it gets to the thing of where does life begin. Some people…don’t really care [and think] “I'm not using the cells.” But people want to know, they want to be asked for permission, they don't want to find out after the fact that their cells are being used for research.”

As medical genetics becomes more personalized, there will be a continued conflict between the needs of science and our own need for control of our DNA. This conflict can lead to exploitation, as the Henrietta Lacks case demonstrates. But as the Lacks case also shows, solutions can also be found which benefit both essential principles without sacrificing our basic human rights.