It’s not about money. Though many have made a lot off the cells of Henrietta Lacks, her surviving family members won’t see any of it. But her descendants will finally gain some control over how pieces of the poor black woman who died in Baltimore in 1951 are used in medical research. When scientists and doctors crave the key to the genetic code that unlocked treatments and vaccines, two family members will have a seat at the table where the decisions are made.
It’s about time.
Under an agreement announced Wednesday by the family and the National Institutes of Health, the Lacks family will also receive overdue recognition in any scientific papers that result. Medical ethicists praise the decision.
“The main issue was the privacy concern and what information in the future might be revealed,” said David Lacks Jr., grandson of Henrietta Lacks, the Associated Press reported. Since DNA is inherited, making her genetic information public would expose them as well.
Though the story of Henrietta Lacks is an extraordinary one, its pattern of exploitation is, unfortunately, all too common. When she died in Baltimore’s Johns Hopkins Hospital of cervical cancer at the age of 31 and her cells were removed to become the first human ones (dubbed HeLa cells) that could be grown indefinitely in a laboratory, no one bothered to ask permission. Her family didn’t know the role she played in providing the groundwork for the multibillion-dollar biotech industry, even when researchers investigated her children and published family medical records.
The 2010 best-seller “The Immortal Life of Henrietta Lacks” by Rebecca Skloot told the story. The author sat in on recent negotiations, after German researchers published the DNA code of a strain of HeLa cells without permission (it was later removed from public databases after complaints) and University of Washington researchers derived a genome from a different HeLa strain with NIH funding and submitted it for publication.
Living in a time when trying to reserve a corner of privacy is becoming more difficult, this one win for the Lacks family is, admittedly, a small one. It also comes decades too late. Since America’s beginning, big fortunes and big companies, the educated and powerful have used what they needed and taken what they wanted. Sometimes those who make those advances possible are compensated and acknowledged; often, they are not. And though advances for the “greater good” can result, those who are overlooked on the road to progress, like the family of Henrietta Lacks, deserve better.
Despite the difficult journey, her family is generous and finds comfort in the future. Jeri Lacks Whye, a granddaughter, told AP: “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.”
The institution that initially realized the value of the cells of Henrietta Lacks, Johns Hopkins Hospital in Baltimore (where, coincidentally, I was born) is a deservedly famous and honored place. But the Lacks story calls to mind another case of an African American who helped make Johns Hopkins’s reputation and was ignored for years.
The hospital’s pioneering treatment for “blue baby syndrome,” a heart defect in infants, was developed in the 1940s by African American surgical technician Vivien Thomas, though Dr. Alfred Blalock, the white surgeon he assisted, received the pay and academic accolades. It took years for Thomas’s expertise and innovative accomplishments to be acknowledged.
As our country alternately struggles and ignores the calls to discuss institutional racism and the divide that still exists, the story of Lacks is a reminder that every race contributes to America’s progress. We are all related — right down to our DNA.
Mary C. Curtis, an award-winning multimedia journalist in Charlotte, N.C., has worked at The New York Times, Charlotte Observer and as national correspondent for Politics Daily. Follow her on Twitter: @mcurtisnc3