NEW YORK — About 60 years ago, a doctor in Baltimore removed cancer cells from a poor black patient named Henrietta Lacks without her knowledge or consent. Those cells eventually helped lead to a multitude of medical treatments and lay the groundwork for the multibillion-dollar biotech industry.
It’s a saga made famous by the 2010 best-seller “The Immortal Life of Henrietta Lacks.”
Now, for the first time, the Lacks family has been given a say over at least some research involving her cells.
Lacks’ family members have never shared in any of the untold riches unlocked by the material, called HeLa cells, and they won’t make any money under the agreement announced Wednesday by the family and the National Institutes of Health.
But they will have some control over scientists’ access to the cells’ DNA code, and they will receive acknowledgment in the scientific papers that result.
The agreement came after the family raised privacy concerns about making Henrietta Lacks’ genetic makeup public. Because DNA is inherited, information from her DNA could be used to make predictions about the disease risk and other traits of her modern-day descendants.
Under the agreement, two family members will sit on a six-member committee that will regulate access to the genetic code.
“The main issue was the privacy concern and what information in the future might be revealed,” said David Lacks Jr., grandson of Henrietta Lacks, at a news conference.
Jeri Lacks Whye, a granddaughter who lives in Baltimore said, “In the past, the Lacks family has been left in the dark” about research stemming from HeLa cells. Now, “we are excited to be part of the important HeLa science to come.”
Medical ethicists praised the NIH action. There was no legal obligation to give the family any control over access to the genetic data.
“They’re doing the right thing,” said Dr. Ellen Wright Clayton of Vanderbilt University’s Centre for Biomedical Ethics and Society. “Having people at the table makes a difference in what you do,” she said, noting that some American Indian groups have a similar arrangement with researchers.
Rebecca Skloot, author of the acclaimed 2010 book and an alumna of Colorado State University, sat in on the negotiations leading to the agreement. She said family members never demanded money.
“This discussion wasn’t about money for them,” she said. Skloot noted that family members are earning income from a packed schedule of speaking engagements and have also received donations from a foundation the writer established.
