Lacks family strikes privacy deal

The family of Henrietta Lacks -- the woman at the center of the bestselling book “The Immortal Life of Henrietta Lacks,” whose cancer cells have been used in tens of thousands of cancer studies -- have reached an agreement with the National Institutes of Health (NIH) that will both protect the family’s privacy and allow researchers to continue to use the cells, the leading medical facility announced Wednesday.

"Just like their matriarch, the Lacks family continues to have a significant impact on medical progress by providing access to an important scientific tool that researchers will use to study the cause and effect of many diseases with the goal of developing treatments," NIH Director Francis S. Collins said in a statement.

Under the new agreement, "two representatives of the Lacks family will serve on NIH’s newly formed, six-member working group that will review proposals for access to" Henrietta Lacks' cells.

Lacks died in 1951 at the age of 31, while receiving treatment for cervical cancer at Johns Hopkins University in Baltimore. Without Lacks’ consent, cells were taken from her tumor for use in research.

But Wednesday's announcement will mean her family has, for the first time, a say in how her legacy in scientific research is shaped.

Lacks' cells, commonly referred to as HeLa, have been widely used in studies that resulted in some of the largest medical breakthroughs over the past six decades, including “the development of modern vaccines, cancer treatments, in vitro fertilization techniques, and many others."

A German research team that published a gene map of the cells in March provoked outrage in the medical community and among Lacks’ descendants, angry over breached privacy concerns.

"That work triggered strong reactions from researchers, patient advocates and bioethicists who were concerned it violated the privacy of the Lacks family because of the potential to identify the family’s possible disease risk," the NIH release read today.

As of Wednesday, NIH researchers using HeLA cells will be expected to keep their findings in a single database. Lacks’ decedents -- together with the NIH working group – will decide how the information contained in the database is shared.

Al Jazeera