Quantcast
Get breaking news alerts via email

Click here to manage your alerts
In this July 30, 2013 photo made available by the National Institutes of Health, a researcher places HeLa cells in an incubator at 37 degrees Celsius at a lab at the National Cancer Institute in order for them to multiply. The cancerous cells, originally taken from Henrietta Lacks in 1951 without her knowledge or consent, were the first human cells that could be grown indefinitely in a laboratory. These "HeLa" cells have been crucial for key developments in such areas as vaccines and cancer treatments. (AP Photo/National Institutes of Health, Maggie Bartlett)
Feds, family of Henrietta Lacks reach deal on use of DNA information
First Published Aug 07 2013 12:45 pm • Last Updated Aug 07 2013 12:47 pm

New York » Some 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 laid 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."

Join the Discussion
Post a Comment

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 acknowledgement in the scientific papers that result.

The agreement came after the family raised privacy concerns about making Henrietta Lacks’ genetic makeup public. Since 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," David Lacks Jr., grandson of Henrietta Lacks, said 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.


story continues below
story continues below

"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 Native American groups have a similar arrangement with researchers.

Rebecca Skloot, author of the acclaimed 2010 book, sat in on the negotiations leading to the agreement, and 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.

Henrietta Lacks, who died in 1951 at age 31, was being treated for aggressive cervical cancer at Johns Hopkins Hospital when the cells were removed. The lack of consent was typical of the time, long before modern-day rules were put in place.

The cells were the first human cells that could be grown indefinitely in a laboratory. They became crucial for key developments in such areas as vaccines and cancer treatments.

HeLa cells are the most widely used human cell line in existence today. But Lacks died of her disease without knowing about them, and family members didn’t learn of them until 25 years later.

They weren’t told in the 1970s, when doctors did research on Lacks’ children. And in the 1980s, family medical records were published without family consent, according to Skloot.

The story took a new turn in March, when German researchers published the DNA code, or genome, of a strain of HeLa cells. The researchers hadn’t sought permission from the Lacks family before publishing, and the family found out about it from Skloot.

"It was shocking and little disappointing, knowing that Henrietta’s information was out there," Whye said. "It was like her medical records are just there to view with the click of the button. They didn’t come to the family. ... It was like history was repeating itself."

After complaints, the researchers removed the genome data from public databases.

Meanwhile, a team from the University of Washington had derived a genome from a different HeLa strain with funding from the NIH and submitted it for publication.

Next Page >


Copyright 2014 The Salt Lake Tribune. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Top Reader Comments Read All Comments Post a Comment
Click here to read all comments   Click here to post a comment


About Reader Comments


Reader comments on sltrib.com are the opinions of the writer, not The Salt Lake Tribune. We will delete comments containing obscenities, personal attacks and inappropriate or offensive remarks. Flagrant or repeat violators will be banned. If you see an objectionable comment, please alert us by clicking the arrow on the upper right side of the comment and selecting "Flag comment as inappropriate". If you've recently registered with Disqus or aren't seeing your comments immediately, you may need to verify your email address. To do so, visit disqus.com/account.
See more about comments here.
Staying Connected
Videos
Jobs
Contests and Promotions
  • Search Obituaries
  • Place an Obituary

  • Search Cars
  • Search Homes
  • Search Jobs
  • Search Marketplace
  • Search Legal Notices

  • Other Services
  • Advertise With Us
  • Subscribe to the Newspaper
  • Login to the Electronic Edition
  • Frequently Asked Questions
  • Contact a newsroom staff member
  • Access the Trib Archives
  • Privacy Policy
  • Missing your paper? Need to place your paper on vacation hold? For this and any other subscription related needs, click here or call 801.204.6100.