Skip to main content

Who controls our genes after we die?

Who controls our genes after we die?


Landmark agreement finally gives the Lacks family a say on who uses their ancestor's genome

Share this story

Partial control over what are perhaps the most researched cells in science has been handed to the descendants of their owner, Henrietta Lacks. The agreement marks the end of over six decades of cell research without the permission of the owner or her family. Under new rules, scientists will have to ask for authorization to carry out any genome research derived from the famous HeLa cells.

Twenty tons of HeLa cells have been used to date

In 1951, unbeknown to her, doctors took a pair of tissue samples from Henrietta Lacks' cervix. Since discovering that Lacks' cells were able to survive outside her body, scientists have grown and analyzed around twenty tons of the "HeLa" cells for a wide range of studies, including vaccine development and product safety testing. Lacks lost her battle against the cervical cancer doctors were originally investigating just a few months after the samples were taken, and her family wasn't made aware that HeLa cells were being used until the seventies.

For 62 years, Lacks' family hasn't been consulted on what happens to their ascendant genes. This ethical dilemma was heavily explored in Rebecca Skloot's best-selling book, The Immortal Life of Henrietta Lacks, and more recently Skloot has written for the New York TImes about the potential privacy issues surrounding the HeLa genome. In the NYT article, Skloot revealed that a scientist was able to produce a "report full of personal information about Henrietta Lacks and her family" in a matter of minutes. This begged the question: shouldn't we have a say in what's done with our genes?

A report full of personal information about Henrietta Lacks and her family could be produced in minutes

The answer to that ethical dilemma, as deemed by the National Institutes of Health (NIH), is a resounding yes. "The biggest concern was privacy," Jeri Lacks Whye, Henrietta Lacks' granddaughter, tells the NYT. "What information was actually going to be out there about our grandmother, and what information they can obtain from her sequencing that will tell them about her children and grandchildren and going down the line." Under the landmark agreement, Lacks' descendants will be consulted when biomedical researchers request access to the HeLa genome, which will be stored in an NIH-controlled database. According to the New York Times, the Lacks' family won't benefit financially from the arrangement, and have already consented to at least one study.