Body + Brain

09
Aug

Henrietta Lacks’s Family Finally Gets A Say

Carl Zimmer, writing for the New York Times:

Henrietta Lacks was only 31 when she died of cervical cancer in 1951 in a Baltimore hospital. Not long before her death, doctors removed some of her tumor cells. They later discovered that the cells could thrive in a lab, a feat no human cells had achieved before.

Soon the cells, called HeLa cells, were being shipped from Baltimore around the world. In the 62 years since — twice as long as Ms. Lacks’s own life — her cells have been the subject of more than 74,000 studies, many of which have yielded profound insights into cell biology, vaccines, in vitro fertilization and cancer.

But Henrietta Lacks, who was poor, black and uneducated, never consented to her cells’ being studied.

In 1973, a researcher interested in comparing family members’ genes to Ms. Lacks’s contacted her children. It was the first they heard of the cells. Rebecca Skloot brought attention to the story in her bestselling book The Immortal Life of Henrietta Lacks, published in 2010.

In March of this year, a study detailing the genetic sequence of HeLa cells was published, providing public access to a downloadable version of the genome. Another similar study was slated to be published soon after. The family—who had previously been unaware of the projects—objected, citing privacy issues. (Information from Ms. Lacks’s genome could be used to make inferences about her children and grandchildren’s genes—medical information generally kept private.) The published study was taken down and the other postponed until a compromise could be made.

After months of discussion, the Lacks family and the National Institutes of Health recently reached a compromise. It doesn’t give the family any right to earnings from future research—nor have they received any compensation for profits made in the past. However, it does provide more privacy.

collins
Dr. Francis Collins, the director of the National Institutes of Health, and members of the Lacks family celebrate the compromise.

The agreement requires that any scientist who wants access to the genomic data will need to justify their research to a committee first. If access is granted, they must submit annual updates of their findings. Sixty-two years after the cells were unknowingly taken, the Lacks finally have a say—two members of the six-person committee will be from the Lacks family.