A Family Consents to a Medical Gift, 62 Years Later


Henrietta Lacks was only 31 when she died of cervical cancer in 1951 in a Baltimore hospital. Not long before her death, doctors removed some of her tumor cells. They later discovered that the cells could thrive in a lab, a feat no human cells had achieved before.

Soon the cells — nicknamed HeLa cells — were being shipped from Baltimore around the world. In the 62 years since — twice as long as Lacks’s own brief life — her cells have been the subject of more than 74,000 studies, many of which have yielded profound insights into cell biology, vaccines, in vitro fertilization and cancer.

In the journal Nature on Wednesday, a team of scientists from the University of Washington described the HeLa genome, which they recently sequenced. The project is a tour-de-force of DNA analysis, befitting the best-studied human cells in the world.

But the research is exceptional for another reason. Henrietta Lacks, who was poor, black and uneducated, never consented to her cells’ being studied. For 62 years, her family has been left out of the decision-making about that research. Now, over the past four months, the National Institutes of Health has come to an agreement with the Lacks family to grant them control over how Henrietta Lacks’s genome is used.

Written By: Carl Zimmer
continue to source article at nytimes.com


  1. I was having this discussion the other day. Personally I don’t think consent should be required for access to material from an autopsy of biopsy. Put this in an ethical context which is the greater right; a family’s right to deny access to some cancer cells for some irrational emotional reason or the rights of millions of people to new life saving treatment? If the answer is the family should always give consent then why go through the charade in the first place?

    Also, and this is an important point. Clinical medicine and pathology have gone hand in hand for over a hundred years. Millions of people have been cut up to see why died and what could have been done to save their lives. Specimens have been preserved for future research.
    The only reason a circle has been drawn around Henrietta Lacks is that these “immortal” cells have proven unusually useful in research, but you can be sure that many life saving treatments have been pioneered using research involving anonymous material.

    Is it not hypocritical to accept medical care and then expect to have a right to opt out of its advancement? I keep reading that the Lacks have not profited from the use of their grandmothers cancer cells but they have, they have access to more effective health care like the rest of us.

    Am I wrong here. Is it rational to think that families have a right to refuse access to body material which they intend to bury or cremate when that material can save lives?

    Incidentally, I had a biopsy taken myself a couple of weeks back. Probably in the reams of paperwork I signed was my consent for the material to be used in research. It was a formality and in my view unnecessary.

  2. As the journalist Rebecca Skloot recounted in her 2010 best-seller, “The Immortal Life of Henrietta Lacks,”

    Immortality! Unfortunately these immortal self-replicating cells are cancerous.
    Perhaps that is why evolution favours body cells which die after a limited period and are then replaced, by new copies, and sexual reproduction which re-sets the genetic material for the next generation.

  3. Reply to mr_DNA @ 1

    If this full sequencing were to affect only medical research I would agree with you but, as the technology continues to improve, the business sector and employment market will almost certainly acquire and use the data; not to mention governments.

    Medical insurance companies might be tempted to raise the premiums (cervical cancer) of close relatives of one of the best known genome sequences in the world, for instance. If the Lacks family are aware of the possibilities I think they should be acknowledged for their selflessness in foregoing compensation in a country where such litigation is national hobby.

  4. What would happen if these cells were to be used in some research that could save many lives in the future but this family refused to give their consent because of religious prejudices? Perhaps that wasn’t a good idea after all.

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  6. _In reply to #1 by mr_DNA:

    Given Geoff 21’s excellent reasoning regarding genomic sequencing and disease risk, I guess I can only expand on the irrational-emotional. Whilst there is no logical reason to hang on to a dead body for its own sake, people get upset when they find bits of a loved one they’ve said goodbye to are being passed around by those who don’t know who this person was.

    Your comfort with the situation of presumed donation is because you’re already presuming they’ll do it. For what it’s worth, I’m with you – I’m fully signed up to donate everything.

    In the UK we had the Alder Hey Organs Scandal – organs of dead children were routinely (sometimes illegally) retained at autopsy without consent. There were also thymus glands legitimately removed from (live) children during open heart surgery which were then sold to pharmaceutical companies.

    Sure, they won’t miss the parts but the later revelation probably opened a lot of old wounds.

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