Lacks’ story captured headlines after Rebecca Skloot’s 2010 book revealed the dying mother had her cells removed for science—without her permission.
Doctors at Johns Hopkins hospital had tried unsuccessfully to keep alive human cells once they left the body.
Scientists routinely extracted cells from patients with no cruel agenda—they wanted to be able to do scientific research but cells refused to cooperate. They simply didn’t survive.
But in the case of Henrietta Lacks, researchers were able to extract her cells and keep them robust, even after Lacks died from cancer in 1951.
The cells—known by Lacks’ initials—HeLa—are the foundation for research on medical breakthroughs ranging on issues from diabetes to fertility.
But the Lacks family received neither money nor credit for her contributions to science.
A new controversy, which Skloot reported in Sunday’s New York Times, surrounds the sequencing of the HeLa cells and then making the information available publicly on the internet.
Skloot says that having the genetic information available to anyone invades privacy.
But the real issue, she notes, is that the ethical issues rarely keep pace with the technological opportunities.
Researchers in the 1950s were able to keep alive human cells and launch a new era of science. But it took more than 20 years for scientists to agree on policies to protect people who volunteer their hearts, minds and flesh for science.
The internet ushers in innovations but we are ill prepared to meet the ethical issues that arise from them.
The link to the Times editorial is at htp://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html
DNA image from the government website https://www.ncjrs.gov/jru/vol2_issue2_2008/morejusticenews.html