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HeLa Cell Line Genome Data To Be Published

Posted by Soulskill on from the making-right-what-once-went-wrong dept.

ananyo writes "Francis Collins, director of the National Institutes of Health, has brokered a deal with the family of Henrietta Lacks to release the genetic sequence of the HeLa cell line to researchers. The HeLa cell line was established in 1951 from a biopsy of a cervical tumour taken from Henrietta Lacks, a working-class African-American woman living near Baltimore. The cells were taken without the knowledge or permission of her or her family, and they became the first human cells to grow well in a lab. They contributed to the development of a polio vaccine, the discovery of human telomerase and countless other advances. Controversy erupted earlier this year after researchers published the sequence without the permission of the Lacks family. In a Q&A with the journal Nature, Collins explains how the deal was reached."

19 of 88 comments (clear)

  1. Re:That family is filthy fucking rich, right? by fuzzyfuzzyfungus · · Score: 2

    From all the money they earned with Henrietta's intellectual property, I mean.

    Neither the family nor the researcher who cultured the cell line made any money on it (through 'IP' licensing means, I assume having "I cultured an immortal cell line of extraordinary utility" on your CV doesn't exactly hurt a scientist's career...)

  2. Everything you need to know. Engrossing. by WOOFYGOOFY · · Score: 2

    http://www.youtube.com/watch?v=C0lMrp_ySg8

  3. Re:That family is filthy fucking rich, right? by UnknowingFool · · Score: 3, Informative

    Also up until 2010, her grave didn't have a gravestone because she died so poor.

    --
    Well, there's spam egg sausage and spam, that's not got much spam in it.
  4. It could have been anyone's cells by Rude+Turnip · · Score: 4, Insightful

    They just happened to be Henrietta's. The real stars here are the people who conducted the research and actually did the work.

    I mean, if someone used my cells to do something incredible for science, I don't feel like I am particularly deserving of any credit. Those cells have nothing to do with me as a person or my actions.

    --
    Bill Clinton: Pimp we can believe in. - The Shirt!!!
    1. Re:It could have been anyone's cells by goffster · · Score: 2

      Actually, no.

      Her cells have shown the remarkable ability to not die out.
      Everybody else's seem to.

    2. Re:It could have been anyone's cells by interkin3tic · · Score: 3, Insightful

      The privacy concerns are more of a valid issue though. I wouldn't want anyone publishing my parent's genomes, even if they did get my parents' permissions first. Part of that is my genome, so necessarily, part of my DNA would be published with the family name on it.

    3. Re:It could have been anyone's cells by K.+S.+Kyosuke · · Score: 2

      She was special.

      No, her diseased cervix was special. It's not like she was a walking colony.of fused cancer cells. Unless, of course, you want to claim that she was special because she managed to get infected by the right virus at the right time and in the right place. But that's about as much being special as getting hit by a meteorite. It's not as much you who is special as the event on its own.

      --
      Ezekiel 23:20
    4. Re:It could have been anyone's cells by UnknowingFool · · Score: 3, Insightful

      Yes but you can consent to them being used. Henrietta Lacks never gave consent. They were harvested from her and used for decades.

      --
      Well, there's spam egg sausage and spam, that's not got much spam in it.
    5. Re:It could have been anyone's cells by Guppy · · Score: 2

      The privacy concerns are more of a valid issue though. I wouldn't want anyone publishing my parent's genomes, even if they did get my parents' permissions first. Part of that is my genome, so necessarily, part of my DNA would be published with the family name on it.

      Let's flip this around. Suppose for some reason there is something interesting about my personal genetic profile, and I want my data to be published (for SCIENCE!), but my estranged adult child is trying to have the publication quashed. Does he have a right to choose happens to my personal data?

      How about if his sister disagrees and decides she supports the publication? Maybe she supports it because her kid may share some unusual syndrome I have? How about when my grandchild is someday the only one around to make the decision -- let's say my grandchild leaves no descendants, does he get to make the decision that stands for perpetuity, or does it become moot upon his death?

    6. Re:It could have been anyone's cells by Anonymous Coward · · Score: 2, Insightful

      Yes but you can consent to them being used. Henrietta Lacks never gave consent. They were harvested from her and used for decades.

      Be realistic. How many people, prior to DNA becoming a mainstream concept, would ever have given even half a shit if the doctor wanted to use a chunk of TUMOR they had removed? Other than a small group of religious fanatics concerned about someone casting black spells on them with it... nobody, that's who.
      It was the 50's, medical waste was just that- waste. Nobody cared about what you did with their body trimmings any more than they cared what you did with their fecal material and urine.

    7. Re:It could have been anyone's cells by Samantha+Wright · · Score: 2

      Three of them, actually. It was basically a clusterfuck of STDs—three different strains of genital warts all causing cervical cancer at the same time. On the big ol' scale of lifetime achievements, considering that there was pretty much no public education on STDs at the time, it's a bit of a downer.

      --
      Bio questions? Ask me to start a Q&A journal. Computer analogies available for most topics!
    8. Re:It could have been anyone's cells by K.+S.+Kyosuke · · Score: 2

      You're confused . No one is saying the ( volitional )contents of Lack's mind were special, which is basically for some reason where you're putting the bar for the intersection of "special" and "person".

      It's you who's confused because I wasn't considering her mind, not even for a second. This is purely about physical biology.

      They're saying her cells were special

      They were not exactly "her cells"; they were a freak combination of partly her cells and partly something else that resulted in something that was neither of the two (demonstrating this fact neatly with killing her so that would be no confusion about that).

      and they did act in a way that researchers had been frutilessly searching for for a long time.

      Actually, no. I don't think anyone has been "fruitlessly searching for a long time" for this. Similar things have existed in nature for a long time (canine transmissible venereal tumor cell line must have been around for thousands of years), this one just came handy. The problem is also that you never know what kind of cell line an event like this is going to generate, given the essentially unbounded number of possible different properties of the resulting cell cultures, so saying "this is what researchers were looking for" as if the HeLa cell line were some sort of a unique microbiological Messiah is indicative of a serious lack of understanding.

      If you follow the link, you'll see what the whole thing is about.

      It's about everymen being clueless. Pretty mundane stuff, if you ask me.

      White irreligious people of European descent may not care about what does or does not happen with or without their knowledge and permission to their bodies after death

      That makes "white irreligious people of European descent" smart, because it's the reasonable thing to do. Worrying about things you can't affect is a waste of time. Being in denial that things that you won't like are going to happen ("OMG worms are going to eat me!") is no better. Oh, and congratulations for winning the Best Religious Non-sequitur Remark of the Week Award.

      but not everyone is a white, irreligious person of European descent, and what those other people think, matters

      Actually, it doesn't. At least not if you present it like this, as a general statement. If someone said something to me, it would never matter to me merely because someone said that; it would matter to me if it made sense after being given a due amount of critical judgment by me. People do this all the time: it's the only way to filter out complete bullshit that some people spew out by the metric fucktons. And if you think you're different, you're only deluding yourself, everyone filters.

      You get the idea of a private citizen owning their own body after death

      You don't get to actually own anything after your death, the very idea of ownership applies only to living persons.

      and having the right to direct how it will be disposed of

      That's not only impractical but utterly impossible. First, I really hope you collect all your skin flakes as you're walking around spreading them. They are, after all, a part of your body, and during your lifetime, the biomass you shed this way will eventually vastly overshadow the cells that were biopsied from Lacks' cervix. Also, right now, thanks to the carbon cycle, you have in your body parts of other people long dead now who didn't consent to being part of you. What horror! But most people don't actually care about that. Talk about hypocrisy...

      I'll bet I mean, you'd scream bloody murder if the state started disposing of dead people's effects as the state saw fit.

      If you'ra talking about effects, these disappear when you take them, so if anyone is actually interested in them, you'd deprive that person of these effects. Here the equivalent would stealing Lacks' body from the morgue which is an event that simply didn't take place.

      --
      Ezekiel 23:20
  5. What right do they have? by brillow · · Score: 2, Insightful

    Tissue samples taken from your body, are not your property.

    Also, Ms. Lacks is long dead, why does anyone care what her family says about anything? They aren't their cells.

    1. Re:What right do they have? by UnknowingFool · · Score: 2, Insightful

      So I can come right over and extract tissue samples without your consent? Later I'm going to publish your genome and show the world all your genetic flaws and all the markers that show your risk to cancer. Don't want it published? Too bad. This would not be an issue if they asked and got her permission.

      --
      Well, there's spam egg sausage and spam, that's not got much spam in it.
    2. Re:What right do they have? by Rockoon · · Score: 2

      So I can come right over and extract tissue samples without your consent?

      Are you suggesting that thats what they did in this case?

      Since it isn't, nothing you say that relies on this tripe bullshit actually matters. They did not kidnap this woman, strap her down, and forcefully extract her blood without consent.

      She consented. Nobody at all seems to think otherwise 'cept for you.

      --
      "His name was James Damore."
    3. Re:What right do they have? by UnknowingFool · · Score: 4, Insightful

      Are you suggesting that thats what they did in this case?

      Suggesting it? Have you read up anything on this case? From wikipedia:

      Neither Lacks nor her family gave her physician permission to harvest the cells. At that time, permission was neither required nor customarily sought. The cells were later commercialized. In the 1980s, family medical records were published without family consent. In March, 2013, German researchers published the DNA code, or genome, of a strain of HeLa cells without permission from the Lacks family

      Since it isn't, nothing you say that relies on this tripe bullshit actually matters. They did not kidnap this woman, strap her down, and forcefully extract her blood without consent.

      Please read up something on this case before spouting out BS yourself.

      She consented. Nobody at all seems to think otherwise 'cept for you.

      Please show me one source, one form where she consented to have tissue samples harvested from her for medical research. These days, I have to sign a crap load of documents just so that my insurance can share my name with third parties. Back then they just took what they wanted.

      --
      Well, there's spam egg sausage and spam, that's not got much spam in it.
    4. Re:What right do they have? by Rockoon · · Score: 2

      Please show me one source, one form where she consented to have tissue samples harvested from her for medical research.

      Why are you moving the goal post?

      She went to that hospital because she had cancer. During her treatment they cut out some of her cancer. She did this all willingly. Nobody stole her cells without permission.

      So the argument goes right back to if those cells, after her willingly let them extract them, are her property or not

      This is why your scenario of going to someones house and taking their cells against their will is different. This is why your made up scenario does not fit the real scenario. She had cancer. They removed some of it. She did not say "please don't cut out the cancer" .. she said "please try to cut out all the cancer"

      --
      "His name was James Damore."
  6. Many People Miss The Central Lesson of HeLa by Jane+Q.+Public · · Score: 3, Interesting

    ... and that is:

    The line of cells that was used for decades to develop drugs and treatments, and do other research, were not "normal" human cells at all, but cancer cells.

    It wasn't until relatively recently that some scientists pointed out that maybe they weren't such a suitable medium for a lot of the research that had been done in the past.

  7. I use them by Sir+Holo · · Score: 4, Interesting

    I learned about the HeLa cell line recently, because I've begun working with them. In the field, they are a sort of de-facto standard. It's amazing that the culture of her tumor has lived this long –– far longer than it took to kill its host –– in fact for decades more. Henrietta Lacks deserves respect and remembrance for her unwitting gift to humankind, which arose from her own personal tragedy.

    Fun fact: There are cancers that one can "catch" from another infected individual. If you are a Tasmanian devil, Syrian hamster, or sexually promiscuous dog, that is.

    See the Wiki or Harper's mag for details. http://harpers.org/archive/2008/04/contagious-cancer/ –– Don't like pay-walls? Go to your local library!