Transplant ethics
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Suspended
A forenote: I acknowledge in advance that this might be tough to talk about. I'm really asking because I can't straighten it out in my own head. If it is too hard to talk about, I totally understand if it is necessary to close and delete the thread.
Also apologies if medical terms below are wrong. I'm interested in the ethics rather than the specifics.
During a blood test at your local family doctor, it turns out that you have a *very special antibody* that nobody else in the world has.
1. The doctor asks if you would be prepared to donate regular amounts of blood to people in your family and local community with a debilitative disease.
2. Your regional specialist hospital hears about it and asks if you will supply antibodies for patients in the wider region country because at present it is impossible to synthesise the antibody. But a) it is going to fairly difficult and painful for you and b) there may be other complications for you which may mean that c) you can never work (or do what you enjoy doing normally) ever again. And also d) you will never be paid for this.
3. Hospitals overseas hear about it and want supplies of the antibody. For which they will pay, but nothing will ever come back to you.
My gut feeling is that people might be happy to do 1) may be persuadable about 2) but might well be uncomfortable with 3).
In the reverse (ie being a patient needing something from someone they are never likely to meet ever from a different country) I don't think many of us would feel it was much of a moral problem.
I think I'm in this group. I'm uncomfortable with a health service selling my body overseas but if I had a child who needed it I would not be thinking twice about accepting it.
Also apologies if medical terms below are wrong. I'm interested in the ethics rather than the specifics.
During a blood test at your local family doctor, it turns out that you have a *very special antibody* that nobody else in the world has.
1. The doctor asks if you would be prepared to donate regular amounts of blood to people in your family and local community with a debilitative disease.
2. Your regional specialist hospital hears about it and asks if you will supply antibodies for patients in the wider region country because at present it is impossible to synthesise the antibody. But a) it is going to fairly difficult and painful for you and b) there may be other complications for you which may mean that c) you can never work (or do what you enjoy doing normally) ever again. And also d) you will never be paid for this.
3. Hospitals overseas hear about it and want supplies of the antibody. For which they will pay, but nothing will ever come back to you.
My gut feeling is that people might be happy to do 1) may be persuadable about 2) but might well be uncomfortable with 3).
In the reverse (ie being a patient needing something from someone they are never likely to meet ever from a different country) I don't think many of us would feel it was much of a moral problem.
I think I'm in this group. I'm uncomfortable with a health service selling my body overseas but if I had a child who needed it I would not be thinking twice about accepting it.
Comments
I don't think I could be the person who refused treatment because of unethical practice.
But then I don't give blood anyway - it's not advisable with my health conditions - and I am fine with this. I have other ways to give of myself which don't involve making me unwell. If I am unwell I can't give of myself in those ways.
This is making me think of the novel Never Let Me Go, by Kazuo Ishiguro.
I am also thinking that if there was someone in the world whose blood had a special antibody that helped reduce the symptoms of the chronic illnesses that I have, I wouldn't want them to spend their life donating blood to me and others with my illnesses, while their life was diminished. I wouldn't feel comfortable with them being pressured to experience pain and risk to alleviate my illness. This would feel very wrong, and if I had chance to talk to them, I'd tell them not to do it. I would want them to live their life doing what they want to do.
Sorry you will just have to take my word that this situation is happening.
Don't be distracted by the medical terms. I used fairly random ones to avoid talking about the real situation.
Exactly so. Thank you.
If some people make a financial gain from it, well that's life. I might hope that they would help me with the means to stay alive, after all it's in their best interests both physically and financially.
In practice, I might wimp out.
It sounds as if you are wrestling with an ethical dilemma about your own particular scenario. Can you talk this through confidentially with someone who has an independent perspective? If you are a person of faith you might want to pray for guidance. Perhaps you could write it all out for yourself with a list of pros and cons to see if that brings any clarity?
Thank you for being this honest. I don't think I'm this good.
I don’t think it’s goodness. It is also selfish - I would feel bad if a stranger was reducing their quality of life to enhance mine. I don’t want to feel bad, or beholden to anyone in this way.
If, however, this was an established practice and lots of people were doing it, so this antibody was readily available, it might be a different story, because my choosing not to take it wouldn’t stop this practice - in the same way that I order things from Amazon despite hearing stories of how they treat their employees.
Though perhaps taking part of someone’s body into my body would still seem too wrong for me to do it. I could argue logically that taking advantage of people being mistreated is wrong regardless of whether you’re taking a piece of their body, but my gut reaction to having part of someone’s blood in me would feel too personal, too tangible, and I think I would find it too hard to live with if I knew they’d been coerced into this and their quality of life had decreased as a result.
I’m very aware this is double standards, and a self-focused reaction. But I also think as humans our minds more easily can take in the individual than the large scale, that we operate as individuals with individuals - or at least, I do - which is also why I think it makes sense for a person to donate their blood for someone they know and care about, but not on a large scale, where their body becomes a factory farm for people around the world.
People with rare blood group types are carefully managed in that they might be asked to donate more frequently, but still within strict interval limits, certainly the NHS in the UK doesn't want to make their donors ill by donating. As well as having a tendency to 'kill the goose that lays the golden eggs' it would be ethically wrong. I know (as a family member has been one) that bone marrow donors have to wait 2 years after their donation to give blood again, partly in case of the need for a repeat donation, but also to make sure they are back up to 'full production', and giving blood won't harm them.
The donors with the very rarest sub groups get their blood frozen and there are a network of frozen blood banks around the world, which can be called upon for very specific typing requirements if needed. If you want to read more try the NHS blood and transplant page on it.
I'm normally a donor although I'm on a hiatus due to a couple of medical issues that have needed resolving. Donation doesn't normally hurt as so much as it's a bit uncomfortable with a wide bore canula in your arm for 10 minutes (at most), but it's forgotten by the time I've finished my tea and biscuits.
Kidneys are unusual in that they are the only organ that can be taken from a live donor. I would be very sceptical about accepting one from someone who had been paid for it on the grounds that their tissue typing may not have been that thorough, let alone the pressure they faced and the lack of aftercare. I was at school with someone who is on their second donor kidney - the first came from a parent, the second was from a person who had died suddenly. I know they have talked online about mandatory counselling afterwards because of the impact that the ethical questions have on the recipient. FWIW, I am very sure that I want my organs to be donated when I die if possible, and it's partly because I know the impact it has.
As for inability to replicate a human protein, I could see that it would be expensive. There was an example recently where a Canadian researcher invented a drug treatment for a very rare condition, patent bought by a Dutch company which produced a few doses for this one time treatment at $2 million per dose. Then stopped. In this situation funding was obtained some decade or more later to create a parallel treatment. I think it was a monoclonal antibody and it might have been $1 million per dose, basically attached to a virus which changed DNA and fixed the genetic error.
The general blood donor scheme here is run by the Red Cross and no donor gets paid. All you get is the cup of tea and plate of pretty awful sandwiches at the end. I don't know if the Red Cross charges but the system would not be cheap - rooms to rent, staff and equipment to pay for, standards to be complied with and records to be maintained.
I have some difficulties with the scenarios outlined in the OP. Is there not a limit to what can be taken from this one donor?
Have you heard of Henrietta Lacks (Wikipedia)?
I haven't read "The Immortal Life Of Henrietta Lacks", but I've heard various news coverage about her.
Read the article. But the situation, as I remember it, was something like this:
Henrietta was an African-American woman in the South. She came down with cancer, and it turned out that one kind of cell in her body could be endlessly replicated--which made it financially valuable. So some of her cells were taken without even asking or telling her.
Henrietta died. At some point, the medical/scientific powers that be went to talk to her grown children--to let them know what was being done, and maybe get permission. Unfortunately, they hadn't had much education, so they didn't have a clue when they were told that part of their mother was living on and on, and helping lots of people. Trying to work that out, within their frame of knowledge, led them to the possibility that maybe their mom wasn't truly dead.
That's about all I remember. But I think someone must have come up with money for them, to pay for the use of their mother's cells. There's a Henrietta Lacks Foundation, The front page has testimonials from 3 of her grandkids, who got grants from the foundation.
The purpose of the foundation, as listed on the front page:
Hope that helps.
Do we? That must be in some other juridiction than those I find myself in. You can sell plasma, but blood is donated freely or not at all.
I recall a similar situation to the OP occurring in Australia, where the donor had saved a couple million babies and was being thanked and allowed to retire. Anyone recall this? News article within the past year. Though if I recall correctly, no one was getting rich on it, and I don’t think he was debilitated, though that many blood donations can’t have been easy.
Yes. That's a terrible but different story of exploitation of a poor person whose cells were taken and used *without permission* until their use became standardised worldwide in research.
That's not quite what I was thinking, although it is certainly possible that cancer patients and others have benefited from research on Henrietta Lacks cells.
I can't imagine anyone refusing to benefit from the research even if they knew about the story. Can you?
Sounds even worse than the RedCross's sandwiches.
You're probably thinking of James Harrison, who (as Gee D surmised) was awarded the Medal of the Order of Australia in 1999. He made over 1000 donations (first of blood, then plasma) at an average rate of once every three weeks for over 60 years, and retired last year when reached the age of 81, exceeding the maximum age for donation under Australian policy.
(I donated blood and platelets and plasma regularly for years, but quit because I got fed up with the lengthy and pointless sexual screening.)
Lack of consent--well, I can't really see that, at least in the case of a living donor. The H. Lacks case is unusual in that her cells went on being useful after her death--in fact, all the benefit came after her death--and so the case becomes (to me) a case which requires apology and compensation, but is not a consent issue anymore. (We've trampled way past that point, which is why compensation and apology are totally necessary.)
Now the whole compensation issue needs to be dealt with on terms of justice and equity. Exploitation is exploitation, regardless of whether it's a bodily issue or something else like effort, skill, etc. But I don't see that as an issue unique to medical donation. It should be sorted out according to the same basic principles we'd use for any other payment (unless waived by the donor) and if the donor's rights are being trampled, it ought to end up in the courts.
I'm not so certain that this is exploitation. The mass culturing of the HeLa cells did no damage to Mrs Lacks. Certainly lots of science has been done, and lots of money made, using cells cultured from her original sample, but those things did no harm to either her or her family. In effect, nothing was taken from her. There are, certainly, privacy concerns with respect to her living family when it comes to things like DNA sequencing of her cells, but I think that's different from "exploitation" - and is a wider issue. In general, what privacy do any of us have against our relatives uploading their genetic profile to a genealogy website?
I think it is exploitation because the person concerned never had an opportunity to say no.
Arguably she was not personally harmed by a doctor using her body in this way, so I agree that's something.
But if she had been aware, and had objected, how would we now feel if the HeLa cells had been taken anyway?
How would we feel if Mrs Lacks had come under incredible pressure in the midst of a terrible illness to allow it?
Personally, I think we'd feel bad about it. We are only horrified-but-accepting because we tell ourselves that she wasn't hurt and didn't know.
For me, the impact on others would be an important consideration. I'd find it hard to risk my income if that income was keeping a roof over my children's heads. Twenty years ago I would not have done anything which might have prevented me from caring for my young children in the long term.
That said, I was on the Anthony Nolan register and at one point was a potential bone marrow donor for a stranger. In the event, someone else was a better potential donor. I would have donated bone marrow, as a one-off, in a heartbeat.
Yes, but... When I was in Texas with the parent company of my then Canadian employer, there was a blood drive, and being 0- I was made welcome and made my donation. As I left I was told, "Of course, you can't draw blood from this bank, as you're not a member of the company's insurance plan". It is more blessed to give than to receive, I suppose.
Sorry Fineline - I didn't get back to this. My brother's reaction was squeamish, not related to any other medical problem. He chose his solution, and it worked for him, but I am in no way advocating this approach for anyone else, especially people with medical conditions where giving blood could cause injury.
I agree with all of this, so well put, even the very human response to sacrifice more for your own child than someone you've never met. Surely that's nothing we need to apologize for.
I read Never let Me go and found it the saddest book I've ever read. Ishiguro imagines a world where children are born and raised in a special school for the ultimate purpose of donating their organs when they reach adulthood. It's the end extreme of what we're talking about and a good case for why we need medical ethics.
I've also read the book about Henrietta Lacks and I think it's not the awful example of exploitation some people see it as. She was not singled out because she was a poor black woman, at that time the hospital where she was treated used cancer cells from all their patients for the research they were doing. It was a miracle of sorts that Mrs. Lack's cell reproduced at the rate they did and that they are still used in research today. People have survived cancer because of the work done, but no one set out to profit from these cells. To try to reimburse her descendants for the cells may open the door to trying to trace every drop of blood ever recovered from patients and used in research.
As it stands today according to Google
Tricky. Henrietta's name was attached but the sample was taken, as it was from all the hospital's patients, as part of a routine biopsy.
I used to give blood routinely (before I went to England and was exposed to TB) and I certainly wouldn't care what it was used for and if it happened to be involved in a meaningful discovery I wouldn't expect recognition or recompense.
Henrietta Lack's contribution turned out to be so enormous that I'm glad her memory and her family are being recognized and recompensed (according to the book they still don't quite grasp it all and worry about her cells being "on the moon,") but I don't think laws need to be changed to protect all use of what might otherwise be medical waste.
My father donated his body to a medical hospital and I certainly don't want to know what happened to any of it. Of course he gave consent up front and that may be all that was wanting from Henrietta Lack's story. She was a wonderful, brave lady and probably wouldn't have hesitated to give it.
Consent is everything and should never be pressured from someone else based on our own feelings. My driver's license says I'm an organ donor but my son's license says no, and I'm glad it does, because he would worry about it.