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Tissue issue


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#1 HelenaHandbasket

Posted 20 December 2012 - 01:14 PM

When does ownership of your body end?

I just finished reading The Immortal Life of Henrietta Lacks (Henrietta Lacks died of cervical cancer. The cells were taken from her when she was still alive and were the first human cells that were able to be grown in a lab. They are still used worldwide and contributed to many medical discoveries such as vaccines and how cells work. Her cell line is a multi-billion dollar business. The family never recieved a single cent)   It raised a number of issues that have got me thinking.

My understanding is that when you have a biopsy done, or blood drawn, or anything like that. The cells/tissues are kept and may be used for research purposes. The cells from Henrietta Lacks were used to learn about AIDS, create vaccines, sent into space, and were used to test nuclear weapons.

What say should people have over these parts of their bodies that have been removed? Should you receive part of the profits if your cells end up being pretty unique and end up being bought and sold for a lot of money?

Edited by Helena Handbasket, 20 December 2012 - 01:16 PM.


#2 Angelina Ballerina

Posted 20 December 2012 - 03:02 PM

I can only hope that one day I have a biopsy that makes such an amazing contribution to medical science.

In pathology labs and hospitals, blood samples are kept for a week or two in case further tests are needed and then they are destroyed. I think you need to provide consent for samples to be used for research.

I don't expect my family to get any money or reward for my donated organs and view this the same way.

#3 Great Dame

Posted 20 December 2012 - 03:19 PM

I'm not familiar with the story.  Did she give permission?  Do the family have sour grapes?

How much profit would there really be based on just her cells?  Were they some how unique, different to others?  Or could any cells have been used?  I'm not sure how it could be concluded that her cell line alone is a multi-billion dollar business.  What about the guys doing the work; developing, discovering?  

I also think it's a pretty amazing contribution.

#4 HelenaHandbasket

Posted 20 December 2012 - 03:20 PM

Would you be equally ok with your cells being used to test and/or aid the developmentd of nuclear weapons or methods of biological warfare?

#5 Great Dame

Posted 20 December 2012 - 03:24 PM

Was permission sought?  My answer really depends on whether permission was granted or not.

#6 HelenaHandbasket

Posted 20 December 2012 - 03:28 PM

QUOTE (Madame Catty @ 20/12/2012, 04:19 PM) <{POST_SNAPBACK}>
I'm not familiar with the story.  Did she give permission?  Do the family have sour grapes?

How much profit would there really be based on just her cells?  Were they some how unique, different to others?  Or could any cells have been used?  I'm not sure how it could be concluded that her cell line alone is a multi-billion dollar business.  What about the guys doing the work; developing, discovering?  

I also think it's a pretty amazing contribution.


No. She didn't give permission. The family did have 'sour grapes' as at one point, they were paying a buttload of money (they were poor and had no health insurance) for medication that was created as a result of their mothers cell cultures. (there are many other issues as well)

It certainly is a multi-billion dollar business. "Henrietta’s cells were the first immortal human cells ever grown in culture. They were essential to developing the polio vaccine. They went up in the first space missions to see what would happen to cells in zero gravity. Many scientific landmarks since then have used her cells, including cloning, gene mapping and in vitro fertilization." from Smithsonian.com. The book mentioned a single vial of her cells being worth well over US$100, labs all over the world use these cells.

Edited by Helena Handbasket, 20 December 2012 - 03:29 PM.


#7 Chief Pancake Make

Posted 20 December 2012 - 03:30 PM

From what I remember the tissue samples were taken in the USA back in 1950ish?  Laws about consent were pretty much non existant then.

I Australia we have the tissue act which is very strict about getting consent for samples and prohibits the sale  of any tissues or organs.

#8 countrymel

Posted 20 December 2012 - 03:40 PM

QUOTE (Chief Pancake Make @ 20/12/2012, 04:30 PM) <{POST_SNAPBACK}>
From what I remember the tissue samples were taken in the USA back in 1950ish?  Laws about consent were pretty much non existant then.

I Australia we have the tissue act which is very strict about getting consent for samples and prohibits the sale  of any tissues or organs.



Yes the damn human tissue act meant I couldn't bring my gallstones home!  I have seen them cut and polished before and really wanted to use them in my jewellery!

I have signed consent forms that allow our embryos (if there are any left over) to be used in clinical experimentation, so I think I'd also be fine if they wanted to use my tissue/blood/etc.

#9 Laborious Nicety

Posted 20 December 2012 - 03:44 PM

It's a fascinating book which raises many issues.

Then?  I think the family should have been given a share in the money made from Henrietta's tissue.  Now?  It would not occur to me to ask for money but I think the mapping of the human genome has changed a lot of perceptions.

But that family were poor and lied to and it is a terrible story.

#10 Flashheart

Posted 20 December 2012 - 03:47 PM

My mother had  two malignant, but non-metastatic tumours removed from her bowel over 20 years ago.
For a long time (years)they were "kept alive" in a lab in Melbourne and used for a lot of research.
Because of the extraordinarily strong familial incidence of bowel cancer in three generations (so far) of my maternal family we have all been tested regularly.
I know I would have no problem if because of this research a vaccine or treatment was developed that saved lives

Edited by jameses mum, 20 December 2012 - 07:51 PM.


#11 Justaduck

Posted 20 December 2012 - 03:50 PM

Wow no I have no idea what can be done with my blood except test it. I know it is kept for a while in case they order more tests on it, but that was all I am aware of

#12 Livsh

Posted 20 December 2012 - 04:00 PM

I think it would be an honour to make such an awesome contribution to science and medicine.

But, I suppose the issue here is consent. Of course this happened before the issue of consent, indeed before patients were considered important parts of the therapeutic alliance! I believe that consent to use tissue should always be sought and gained, and the law now agrees with me.

It's such an interesting story - I actually used HeLa cells in my research and never knew the story!

One more point - drugs and treatments in medicine are developed using MULTIPLE systems both cell culture, animal models and human testing. To say that Helen's family were paying money for treatments developed using her cells is ignoring all the other myriad cells, tissues, animals and human subjects that would have been used. So I think that aspect of it is pretty dodge!

#13 HelenaHandbasket

Posted 20 December 2012 - 04:07 PM

It would be amazing if a persons cells lead to a cancer cure or another medical breakthrough. Those are all positive things. The HeLa cells were used in testing nuclear weapons though, so obviously not all research done was 'positive' and for the benefit of human kind.

If I ever discovered my cells had been used to help develop something like that, then I'd be horrified and would really struggle with it.

Also, with mapping the human genome, if someone mapped your genes, they also have 50% of your children's genes. When this information can be used to determine a persons risk of certain diseases etc. is it ethical for that information to be logged and stored when the information could potentially be used against you or your children (I know it is not legal now) to deny them health insurance or certain jobs just because someone once signed a piece of paper saying they could use their tissue for research?


Edited by Helena Handbasket, 20 December 2012 - 04:11 PM.


#14 BadCat

Posted 20 December 2012 - 04:12 PM

To be honest it wouldn't bother me at all.  Once it's out of my body I don't care what you do with it.  I don't consider it mine anymore.

I don't like the idea of being paiid for tissue and such. It seems a bit sick to me.

#15 Paddlepop

Posted 20 December 2012 - 04:18 PM

My DH works in medical research for a major university in conjuction with a large public hospital. He obtains blood samples from different patients every fortnight. He has actually collected some blood samples today.

One of the most important parts of the blood collection is the consent form and explaining what the blood will be used for. The patient can withdraw consent at any time and any blood or other product that has created from that patient's blood will be destroyed. It is completely against the university's ethics to use it for any purpose other than what the patient has agreed to.

Hopefully one day the blood samples will lead to a treatment or cure for the illness.



#16 FreeRangeMum

Posted 20 December 2012 - 04:32 PM

I feel that it is a contribution so I would not expect any remuneration. I would love my organs/cells to be used to make such wonderful scientific advances as discussed here!

#17 ~*Twilight~Zone*~

Posted 20 December 2012 - 04:55 PM

Wow that story is fascinating.

I don't know about the money side of it and being paid for her cells and the ongoing profit from it (though it would be nice to have don't get me wrong) I do think they should have extended some sort of courtesy to her family regarding medication and then again when would that end.  How many generations would they be obliged too though?

Augh too much for my little brain to handle

#18 blackcat20

Posted 20 December 2012 - 05:13 PM

QUOTE (Paddlepop @ 20/12/2012, 05:18 PM) <{POST_SNAPBACK}>
My DH works in medical research for a major university in conjunction with a large public hospital. He obtains blood samples from different patients every fortnight. He has actually collected some blood samples today.

One of the most important parts of the blood collection is the consent form and explaining what the blood will be used for. The patient can withdraw consent at any time and any blood or other product that has created from that patient's blood will be destroyed. It is completely against the university's ethics to use it for any purpose other than what the patient has agreed to.


I have the same limits; my patients can give consent for their sample to be used for that project only, or unlimited use in other studies. They can also opt to be informed of anything I find, or not. Though I don't collect the samples myself, it is done through clinics.

I don't think I'd have much issue with cells being used from myself, as long as it is for the greater good. I've already had some of my medical "stuff" presented at conferences when I was younger.

#19 rosiebird

Posted 20 December 2012 - 08:04 PM

QUOTE (Helena Handbasket @ 20/12/2012, 04:07 PM) <{POST_SNAPBACK}>
It would be amazing if a persons cells lead to a cancer cure or another medical breakthrough. Those are all positive things. The HeLa cells were used in testing nuclear weapons though, so obviously not all research done was 'positive' and for the benefit of human kind.

If I ever discovered my cells had been used to help develop something like that, then I'd be horrified and would really struggle with it.

Also, with mapping the human genome, if someone mapped your genes, they also have 50% of your children's genes. When this information can be used to determine a persons risk of certain diseases etc. is it ethical for that information to be logged and stored when the information could potentially be used against you or your children (I know it is not legal now) to deny them health insurance or certain jobs just because someone once signed a piece of paper saying they could use their tissue for research?


I think you're drawing a very long bow with your second paragraph. It's a little ridiculous.


#20 HeroOfCanton

Posted 20 December 2012 - 08:23 PM

QUOTE (Helena Handbasket @ 20/12/2012, 05:07 PM) <{POST_SNAPBACK}>
It would be amazing if a persons cells lead to a cancer cure or another medical breakthrough. Those are all positive things. The HeLa cells were used in testing nuclear weapons though, so obviously not all research done was 'positive' and for the benefit of human kind.

If I ever discovered my cells had been used to help develop something like that, then I'd be horrified and would really struggle with it.

Also, with mapping the human genome, if someone mapped your genes, they also have 50% of your children's genes. When this information can be used to determine a persons risk of certain diseases etc. is it ethical for that information to be logged and stored when the information could potentially be used against you or your children (I know it is not legal now) to deny them health insurance or certain jobs just because someone once signed a piece of paper saying they could use their tissue for research?

This is what would worry me - sounds a bit like something from a Sci-Fi (gattaca, anyone?), but it's a slippery slope if there's no legislation surrounding it.

#21 HeroOfCanton

Posted 20 December 2012 - 08:30 PM

QUOTE (rosiebird @ 20/12/2012, 09:04 PM) <{POST_SNAPBACK}>
I think you're drawing a very long bow with your second paragraph. It's a little ridiculous.

Not really, it's become enough of a potential issue for the US to introduce a Genetic Information Nondiscrimination Act (2008)
http://www.genome.gov/10002077

In Australia, you can't be denied health insurance because of genetic informatio n or family history, but it can "affect a person’s application for life insurance products, such as cover for death and income protection". (from here)
Insurers are only bound by the Disability Discrimination Act, but I imagien they are looking at ways to make people pay more on their premiums based on genetic information.
The link above talks about it briefly, but basically says Australia has no protection from 'misuse' of genetic information beyond the Disability Discrimination Act.

#22 HelenaHandbasket

Posted 20 December 2012 - 08:40 PM

QUOTE (rosiebird @ 20/12/2012, 09:04 PM) <{POST_SNAPBACK}>
I think you're drawing a very long bow with your second paragraph. It's a little ridiculous.



Can you explain why?

There are genes linked to certain diseases, yes? (the breast cancer one comes to mind). And those genes can be inherited, yes?  

That information could be very valuable to a health insurer as a person with a greater chance of developing a disease, like breast cancer, could be denied health insurance or charged much higher premiums.

I know that it is not legal for health insurers to obtain an use information like that currently obtain and use this kind of information. But should a loophole be found or in the future it becomes legal, I certainly wouldn't put it past them to do it.

Some mental illnesses also appear to have a genetic component and can be inherited. If a persons parents suffered bipolar or schizophrenia, and they wanted to join the police force (just an example) and it came down to them and another applicant, if that persons parents genome was available to the police force or any other employer (once again, I know it isn't currently legal) could it not be used against a person?




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