(USA TODAY) -- Relatives of unknowing cell-donor Henrietta Lacks, the subject of the best seller The Immortal Life of Henrietta Lacks, now being made into a movie by Oprah Winfrey, have forged a historic privacy agreement with federal researchers over genetics studies based on her now-famous cancer cells.
The "HeLa" cancer cells grown from tissues taken from Lacks in 1951, the year she died of cervical cancer, were the first to survive to be "immortalized" in test tubes. Their use has become widespread in laboratories, the subject of some 74,000 cancer studies. They have also become the center of recent debates over genetic privacy in the era of gene maps, after a German research team published the gene map, or genome, of the cells in March.
The publication sparked a protest by the family and by Immortal Life author Rebecca Skloot over the invasion of genetic privacy. That led the German team to quickly withdraw the genome from public view. It also started an unprecedented collaboration, announced Wednesday in the journal Nature, between the Lacks family and the head of the National Institutes of Health, Francis Collins, the one-time head of the public Human Genome Project that opened the era of human gene maps a decade ago.
"The main issue was the privacy concern," says Lacks' grandson, David Lacks Jr. "Right now we are in the early stages of genomic science or genomic medicine and we don't know what is going to come down the road in the future."
The new agreement requires NIH-funded researchers to use a "controlled-access" database of the HeLA cell genome, governed by a panel that contains Lacks family members, still living today in Baltimore. The agency is also asking biomedical researchers not funded by NIH to abide by the agreement as a matter of scientific ethics.
Noting that he has used HeLa cells in his own lab, Collins stated that more steps need to be taken to protect privacy rights of genetic sample donors in the future -- even those not made famous by a best-selling book. "Frankly the science has moved faster than the consent process, and maybe it is time to catch up," Collins said in a telephone briefing on the agreement Wednesday.
A related study in the journal, led by Andrew Adey of the University of Washington in Seattle, reports on the identification and location of the human papilloma virus genes inserted into the HeLA cell gene map that caused them to become cancerous. Collins called the study an important step in understanding what made the HeLa cancer cells so deadly to Lacks -- and also made the cells so resilient in the lab.
Collins drove up to Baltimore to talk the agreement over with members of the Lacks family. "That wasn't lost on the family," says author Skloot, who helped set up the meetings with the NIH and family members, and listened to the discussions. "This was the first time in history that scientists really took this kind of time with the family in a really open and transparent way."