Human Genome Privacy Case

Henrietta Lacks became famous in 2010 after the medical use of her cancer cells was described in Rebecca Skloot's book The Immortal Life of Henrietta Lacks. From Amazon.com:

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.

Although her family is proud of what has been accomplished using HeLa cell research, Henrietta is in the news again after two new projects have brought the question of privacy to light.

This past March, European Molecular Biology Laboratory scientists sequenced Lacks’ genome and published it, which meant anyone could download it. In addition, Nature magazine was about to release a new NIH-sponsored study from the University of Washington that had been done on Lacks’ cells, examining the way that they have survived as no other cells have ever been know (sic) to do. The Lacks family objected when they found out about the two projects.

According to Lacks’ granddaughter, Jeri Lacks Whye,

“The biggest concern was privacy — 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.”

Nature held off on publishing the article and the EMBL took the genome data down while the Lacks family and the [National Institutes of Health] discussed how to proceed, and soon the group settled on a policy with which to go forward.

The "HeLa Genome Data Access Group" will include two members of the Lacks family and will make decisions concerning who will have access to HeLa cell information.

Posted by Note Taker