The Hard Cell

Family "in the conversation" after a 60-year battle

By Jess Blumberg - October 2013

Henrietta Lacks’s family finally gets a say in her genome research

Family "in the conversation" after a 60-year battle

By Jess Blumberg - October 2013

-Photo by Mike Morgan

Get Baltimore Daily.

Sign up today and you'll get our latest stories delivered straight to your inbox every weekday afternoon.

It has been a 60-year battle. On January 29, 1951, doctors at The Johns Hopkins Hospital took a biopsy from Henrietta Lacks—wife of a Bethlehem Steel worker—who had an aggressive form of cervical cancer. 

Though she passed away eight months later, the tissue that was used without her consent went on to establish the cell line HeLa—the first immortal human cells ever grown in a culture, which have been invaluable to medical researchers ever since.

However, the Lacks family has never been consulted when researchers use this genomic data—something heavily profiled in Rebecca Skloot’s book The Immortal Life of Henrietta Lacks—until now. In August, the National Institutes of Health (NIH) made a privacy agreement with the Lacks family. “In 20 years at NIH, I can’t think of a specific experience more charged with scientific and ethical challenges than this one,” says NIH director Dr. Francis S. Collins. “It is truly fitting that her story is catalyzing changes in policy.”

Though the cells have been used in countless studies through the years, her family became concerned this past spring when German researchers completed the first whole genome sequence of her cell line and posted it to an open-access database.

“We were left in the dark,” says Owings Mills resident Jeri Lacks Whye, Lacks’s granddaughter, pictured, with her brother David. “For the past 60 years, we were pulled into science without consent and weren’t given a voice until now.”

The new agreement requires NIH-funded researchers to use a “controlled-access” database of the HeLa cell genome, governed by a panel that contains two of her grandchildren, both still living in Baltimore. “We are happy to be in the conversation now,” Lacks Whye says. “This is important in the legacy of Henrietta Lacks as a person.”




You May Also Like



Health & Wellness

Baby on Board: What to (Actually) Bring New Parents

What our friends brought us the first time around that made all the difference.


-Photo by Mike Morgan

Connect With Us

Most Read


Pillow Talk
Add a pop of color, texture, and personality to any room.

Fashion Sense
How designer and BSA alum Christian Siriano made a name for himself in the fashion world.

Book Reviews: October 2017
The latest from Prince photographer Steve Parke and film critic Ann Hornaday.

The Book Thing Bounces Back
A Baltimore literary institution gets reborn, thanks to the community.

Home Cooking
Mera Kitchen Collective gives immigrants and refugees platform to cook.

Doctor Finder