HeLa Genome Agreement
Hi friends of women in science,
If you are among the thousands of people who read Rebecca Skloot's best-seller about Henrietta Lacks' cells and how they became the backbone of biomedical research without any benefit or permission from her or her surviving family members, you may have been shocked to read recently that German researchers published her genome sequence, again without asking permission from the family to reveal the genetic information of their relative. Although there is no legal requirement to request such permission because of the rules in effect back when the cells were obtained from Henrietta Lacks, it was shocking to see history repeating itself in the cause celebre.
I was pleased to read this week in an article by Malcolm Ritter that the NIH has now reached agreement with the family about access to the HeLa genomic information. Skoot was quoted in an ABC article to say that the family concerns were not about money, but about invasion of their medical privacy. They say they removed the complete public access after complaints, in a chorus led by Skloot among others, surfaced. The agreement will require researchers wishing to access the data from either the first study or one that followed rapidly from Washington University, St. Louis, will need approval from a six-member committee that includes a family member, so their concerns will definitely be considered. According to the ABC article, "Applicants will have to agree to restrictions such as not sharing the DNA information with others, reporting back on their results, and acknowledging the Lacks family in their publications.The deal also covers any future HeLa genomes produced with NIH funding."
Genome ethicists are pleased with this step. For example, "'They've basically put (the family) at the table where the decisions are going to be made. That's really a common-sense thing to have done,' said Dr. Robert Cook-Deegan of Duke University's Institute for Genome Sciences & Policy." It has been too hard to ignore the wishes of donors for too long. This step continues to open the closed doors behind which decisions are made, a door that has been partly opened via agreements about genome usage with some American Indian groups.
Ritter pointed out the family reaction, saying, "'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."
What do you think about this issue?
cheers,
Laura
Hi Helen, Sandra, Linda,
I agree with all of you that it's right that her family can have input now. And Helen, good point about how differently things are handled now for those giving samples for medical research. Although I also agree I'm not sure that the average donor can understand all the implications of that.
I also have to say I've heard some pretty ugly conversations about the gullibility of tissue donors from some who have benefitted financially from their generosity. So I have mixed feelings about how well informed consent is working today.
cheers,
Laura
I agree that the Lacks situation is unique. Obviously her cells were taken in a time prior to informed consent and rules about de-identification. Thus her descendants could be exposed to genetic discrimination based on the release of her genome. It's fully appropriate that her family have a say in what happens to her genetic information.
That case, although useful for teaching, does not represent how donor information is handled today. Thus you can't extrapolate to what should occur now.
Most donors are pleased to help advance research without compensation, and most find the idea repugnant of being paid for their samples no less than they would for donated organs for transplant.
I agree that informed consent is a difficult area to discuss when science education in this country is so poor. Do patients really understand the consent documents? But if you look at participation through commercial enterprises like 23andme, where individuals voluntarily release their genetic information to the company, so that they can hunt for genetic susceptibility factors, you can see that in the US many people are comfortable with the current guidelines. In fact, we pay to donate our information if it will help find new therapies for diseases that might affect us and our descendants.
Hi Laura,
No, they shouldn't have taken all that money for her cells and never given anything to the family. I think that it's too bad this new deal doesn't involve money either. People will make another killing looking for genetic cancer clues and share nothing with the biological "owners" of the information. Argh!
SNK
Laura--
It's about time! We really used to think the doctors were all about medical research to benefit the sick, but recently they're reaping rich financial harvests and it's just not fair to invade privacy of sick people, make a ton of money, and give them nothing. Skoot did a great job of telling that story in her book.
LRP
