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Henrietta Lacks’ ‘Immortal’ Impact on Research Now Extends to Patient Consent

August 8, 2013 at 12:00 AM EST
Henrietta Lacks died 62 years ago, but her cells -- known as HeLa -- live on through scientific research, having led to world-changing medical advances for decades. Margaret Warner talks to Dr. Francis Collins of the National Institutes of Health about a new agreement made with the Lacks family over control of her DNA legacy.
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GWEN IFILL: Now: the living legacy of one woman’s DNA.

Margaret Warner has the story.

MARGARET WARNER: In 1951, a poor African-American woman in Maryland became an early and unwitting donor to medical science.

Henrietta Lacks died at age 31 of cervical cancer at Johns Hopkins Hospital in Baltimore. Then doctors discovered that tumor cells they’d removed from her body earlier continued to thrive in the lab, a medical first. Before long, her cells, dubbed HeLa cells, were being used for research around the world, contributing to major advances in everything from cancer treatments to vaccines.

But Henrietta Lacks never gave permission for that research, nor had her family, until now, in an agreement announced yesterday with the National Institutes of Health, which grants the family a limited say over some of the research.

Dr. Francis Collins is the director of the NIH and spearheaded the talks with the family.

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And, Dr. Collins, welcome back.

DR. FRANCIS COLLINS, National Institutes of Health:It’s nice to be here.

MARGARET WARNER: So, Henrietta Lacks’ cells, as we know, are the most widely used cells for research in the world today.

DR. FRANCIS COLLINS: Yes.

MARGARET WARNER: Her family never had a say in this. Why did the NIH decide to seek its buy-in now?

DR. FRANCIS COLLINS: Well, what happened now this year is different.

HeLa cells, yes, have been all over the world used in almost every laboratory studying human biology, including my own. But now what we have had happen is to read out the complete DNA instruction book, the genome of HeLa cells, laying out all kinds of details about why those cells grow so rapidly, but also revealing something about Henrietta’s original DNA instruction book, which, of course, has implications for the family.

And her blood relatives raised concerns, rightly so, that this information being freely available on the Internet might be placing them at risk for people learning things about their medical risks for the future that they would like to keep private.

MARGARET WARNER: And so this agreement you negotiated with the family, what does it grant them? What does it give them?

DR. FRANCIS COLLINS: Well, over three long meetings in the evening in Baltimore with the family — and I give them a huge amount of credit for rallying together and dealing with some pretty complicated scientific facts — ultimately, they are very much in favor of research going forward.

They are wonderfully positive about the legacy of Henrietta, for all of the things it’s done for medicine. They don’t that want to stop, but they did want to have some say over who had access to this DNA information because of its implications for them.

And so we set up a plan where any researcher who would like to have that complete DNA information can put in a rather quick and brief application explaining what they want to do, agreeing that they will not pass the data on to other people, that they will report as to what they have found, and that they won’t try to contact the family members directly.

If that is actually considered appropriate — and two of the Lacks family members will sit on the group that reviews those applications — then the data is made available.

MARGARET WARNER: But two quick questions. They can — the researchers can publish the data — publish the results?

DR. FRANCIS COLLINS: Absolutely.

MARGARET WARNER: And the family will still receive no financial benefit here?

DR. FRANCIS COLLINS: They will not.

And they are basically not asking for that. They did think it was fair to have a seat at table when it is their medical circumstances that might also be involved here, and we thought they were right about that.

MARGARET WARNER: Now, explain a little more what makes Henrietta Lacks’ cells so special? Is it that they can live indefinitely in the lab?Is that unique?

DR. FRANCIS COLLINS: They are immortal.

And there are other cell lines, but this was the first one, derived in 1951. After many failed efforts to get human cells to grow in a petri dish, these cells, HeLa cells, grew and grew and grew and got sent to laboratories all over the world. My own lab works on these cells as well.

MARGARET WARNER: But, now, if you take sequencing the genome, genetic research, aren’t there living people now who are having their genome sequenced? Why couldn’t you just use their — why couldn’t researchers use their DNA?

DR. FRANCIS COLLINS: Well, HeLa cells, because they’re cancer cells, have been used also to learn a lot about cancer.

But a cancer cell has a lot of things that are driving it to grow when it’s not supposed to.And to be able to interpret all those decades of experiments on HeLa cells, it really helps to know what the DNA sequence was.

MARGARET WARNER: So, her cells still remain unique even for this fairly new field?

DR. FRANCIS COLLINS: They do, indeed.

And all the people who will be working on these cells going forward are going to benefit by knowing a bit more than we have known before about what’s driving these cells to keep growing and growing and growing. Turns out, these cells have a copy of the human papilloma virus inserted in the most vulnerable place you could imagine, on chromosome eight, activating a particular cancer gene. This is now probably why we know at last why these cells grow so rapidly.

MARGARET WARNER: Now, how — I don’t want to say well-grounded, but how serious is the risk to the privacy of descendants when you get to the level of grandchildren and great-grandchildren?

DR. FRANCIS COLLINS: Very important question.

It is certainly the case that my children have my DNA, but they also have their mother’s. And it gets diluted as you move further and further away from the individual, but there is still some connection there. And I think her children, her grandchildren, her great-grandchildren therefore have an interest in making sure that this is handled respectfully.

And respect for persons is one of those really fundamental bioethical principles that we can’t brush aside easily, even if it’s inconvenient. And so it seemed very appropriate to listen carefully to their concerns and then to incorporate them into the decision, which I think has turned out really well.

MARGARET WARNER: And so that raises the question of the broader policy implications of this. I mean, does there need to be an accepted policy for dealing with all such cases, even if you don’t have cells like hers that are unique?

DR. FRANCIS COLLINS: Yes, I think that’s a very appropriate question. Basically, Henrietta Lacks, who has given us a legacy of medical research, is also now giving us a new legacy of policy, about how we should handle biological specimens from people. And, basically, the bottom line is, going forward, we ought to ask consent for anybody who is having a tissue sample obtained that might be used for this kind of analysis.

Ask them, is it OK? And if they say yes, then you’re on much firmer ground. And if they say no, that means no.

MARGARET WARNER: But, briefly, today, if one — if you sign an agreement to have a biopsy, are you signing away those rights, or is there something new and specific that would have to be added?

DR. FRANCIS COLLINS: The consent will need to be more precise than it is in most surgical procedures today to make it clear what it is that you’re being asked to agree to.

The Obama administration is working hard on a new way to approach this so that that is not so ambiguous, so that science can flourish, but people have the opportunity to be participants, and not just subjects.

MARGARET WARNER: Dr. Francis Collins, director of the NIH, thank you.

DR. FRANCIS COLLINS: Nice to be with you.