The Straight Dope

Go Back   Straight Dope Message Board > Main > In My Humble Opinion (IMHO)

Reply
 
Thread Tools Display Modes
  #1  
Old 06-29-2013, 06:03 PM
Rachellelogram Rachellelogram is offline
Guest
 
Join Date: Oct 2010
Can children be forced by their parents to donate bone marrow/organs?

Last night I ended up on the gross side of youtube. I watched a series of videos from a UK TV show called "Embarrassing Bodies." Looks like a really great show, for people who are into gross things (which I am, so it is). Anyway, one memorable story involved a 9-year-old child with horrible verrucas on her feet. As it turned out, they discovered she had some kind of immune disorder. As I recall (sorry, I watched a lot of gross videos), she was lacking a bunch of antibodies, which is why her body wasn't fighting off the warts like most people do. Anyanyway, the family was all tested for bone marrow compatibility, and her sister--a minor--ended up donating. The most recent update says that the afflicted kid is getting better and will be able to return to school soon. Hooray!

But naturally, I wondered: what happens if a child doesn't want to donate their bone marrow? Or heck, a kidney? Are they allowed to say no, or is that completely up to the parents? Does it matter if the child refusing is 5, or 12, or 17 and 364 days old? What if the child has extreme needlephobia (complete with vasovagal response)? Would the child's objection be factored in more strongly if the transplantee wasn't a blood relative? Can a child be compelled to donate marrow/organs to a compatible stranger?

I'm also interested in opinions regarding whether or not children should be able to be compelled to donate things, but let's not go so far down the rabbithole that a mod moves this thread to GD. Because I don't like GD.
Reply With Quote
Advertisements  
  #2  
Old 06-29-2013, 06:25 PM
ZenBeam ZenBeam is offline
Charter Member
 
Join Date: Oct 1999
Location: I'm right here!
Posts: 8,606
Those are interesting questions. No surgery is 100% safe. Arguably, it could be child endangerment. You'd hope that the health of the donor child would be an important factor, especially when there's reasonable possibilities of severe complications or long-term health problems.
Reply With Quote
  #3  
Old 06-29-2013, 06:44 PM
Broomstick Broomstick is offline
Charter Member
 
Join Date: Mar 2001
Location: NW Indiana
Posts: 19,036
I have heard that in cases involving potential donors who do not want to donate sometimes the doctors screening for compatibility will say something has been found to eliminate the person as donor, thereby getting said person off the hook without being subjected to emotional blackmail/distress/browbeating by relatives and friends. I don't know if that's actually true, or how often it happens, but such a tactic could be used in the case of a potentially donor child whose parents want for force a donation that is not in the best interests of the donar.
Reply With Quote
  #4  
Old 06-29-2013, 07:28 PM
EmAnJ EmAnJ is offline
Guest
 
Join Date: Jan 2007
My youngest sister, at 12, donated bone marrow to my middle sister, 17, a number of years ago and saved her life. She was the only match. At the time she was gung ho to donate, but now she says she was never given the choice. She tells my middle sister in the heat of an argument that she 'wishes she had never donated because then you [middle sister] would be dead.' Harsh.

Not sure how things like this can be changed apart from excluding minors from the donation pool. As I recall, there was a story about a family with a child that had a fatal disorder/cancer and they purposefully got pregnant to try for a sibling that was a match. I know they did get pregnant and I think the baby was a match. I'm not sure how it all turned out.
Reply With Quote
  #5  
Old 06-29-2013, 07:38 PM
miss elizabeth miss elizabeth is offline
Guest
 
Join Date: Jul 2005
Quote:
Originally Posted by EmAnJ View Post
My youngest sister, at 12, donated bone marrow to my middle sister, 17, a number of years ago and saved her life. She was the only match. At the time she was gung ho to donate, but now she says she was never given the choice. She tells my middle sister in the heat of an argument that she 'wishes she had never donated because then you [middle sister] would be dead.' Harsh.
That is SO fucked up. Jeez.

Quote:
Not sure how things like this can be changed apart from excluding minors from the donation pool. As I recall, there was a story about a family with a child that had a fatal disorder/cancer and they purposefully got pregnant to try for a sibling that was a match. I know they did get pregnant and I think the baby was a match. I'm not sure how it all turned out.
There was a movie about this, right. It was one of those cry-fests I avoid. But yeah, the kid ended up getting a lawyer to make her parents stop using her as a spare-parts maker for the older sister. It was a fucked up story.
Reply With Quote
  #6  
Old 06-29-2013, 08:05 PM
Lasciel Lasciel is offline
Guest
 
Join Date: Dec 2010
I was 12 and my younger sibling was 2 when our entire family was tested for a bone marrow match for my father. I wasn't a match, and we didn't test my sibling because he was too young, but several of my cousins (around 8-10ish?) DID, and we were under the impression that they volunteered, but knowing my cousins and our family, they were probably coerced into doing it.

It's a rough go for kids regardless, at least in my opinion. I was beyond devastated that I didn't match, but on the other hand, I was petrified beforehand that I would, and have to go through the transplant process. I felt like my fears had jinxed the procedure, and it was my fault that we didn't match.

And my relatives didn't "force" me to try - they didn't have to. Between the emotional manipulation and the raging guilt trips and the repeated mentions that it was the only chance for my father to survive, it was sort of a given that we'd all do it. In hindsight, I think that's pretty shitty to do to kids also.
Reply With Quote
  #7  
Old 06-29-2013, 08:10 PM
Manda JO Manda JO is offline
Charter Member
 
Join Date: Jul 1999
Posts: 8,734
Quote:
Originally Posted by Lasciel View Post
I was 12 and my younger sibling was 2 when our entire family was tested for a bone marrow match for my father. I wasn't a match, and we didn't test my sibling because he was too young, but several of my cousins (around 8-10ish?) DID, and we were under the impression that they volunteered, but knowing my cousins and our family, they were probably coerced into doing it.

It's a rough go for kids regardless, at least in my opinion. I was beyond devastated that I didn't match, but on the other hand, I was petrified beforehand that I would, and have to go through the transplant process. I felt like my fears had jinxed the procedure, and it was my fault that we didn't match.

And my relatives didn't "force" me to try - they didn't have to. Between the emotional manipulation and the raging guilt trips and the repeated mentions that it was the only chance for my father to survive, it was sort of a given that we'd all do it. In hindsight, I think that's pretty shitty to do to kids also.
What's the alternative? Would a person really be a better person if they died and left their kid without a parent rather than test them for a match/get the transplant? If I lost my mom as a child and later found out I wasn't tested because she didn't think it'd be fair . . .I would be so angry at every adult in my life that made such a choice for me.

And, frankly, if my son needed a donor and none could be found I'd be at the fertility clinic the NEXT DAY. I wouldn't have the slightest qualm about that.
Reply With Quote
  #8  
Old 06-29-2013, 08:25 PM
don't ask don't ask is offline
Member
 
Join Date: May 2001
Location: Sydney, Australia
Posts: 16,115
Quote:
Originally Posted by miss elizabeth View Post
There was a movie about this, right. It was one of those cry-fests I avoid. But yeah, the kid ended up getting a lawyer to make her parents stop using her as a spare-parts maker for the older sister. It was a fucked up story.
That's only kinda sorta how the movie goes. The whole spoilered story is told here if you never intend to see it.
Reply With Quote
  #9  
Old 06-29-2013, 08:28 PM
Ferret Herder Ferret Herder is offline
Guest
 
Join Date: Mar 2002
Quote:
Originally Posted by Manda JO View Post
And, frankly, if my son needed a donor and none could be found I'd be at the fertility clinic the NEXT DAY. I wouldn't have the slightest qualm about that.
Just curious - would you tell the younger kid why s/he was conceived, or is your son old enough to figure that out himself (and thus spill the beans)?

Last edited by Ferret Herder; 06-29-2013 at 08:29 PM..
Reply With Quote
  #10  
Old 06-29-2013, 08:43 PM
Manda JO Manda JO is offline
Charter Member
 
Join Date: Jul 1999
Posts: 8,734
Quote:
Originally Posted by Ferret Herder View Post
Just curious - would you tell the younger kid why s/he was conceived, or is your son old enough to figure that out himself (and thus spill the beans)?
My son is 20 months, but no, I wouldn't make it a secret. I'd treat like you treat an adoption--you strive to have something that is always known and isn't a big deal because it isn't. I've no doubt I'd love such a child, whether or not they were a match. Kids are conceived for much worse reasons every day.
Reply With Quote
  #11  
Old 06-29-2013, 08:52 PM
Ranchoth Ranchoth is offline
Guest
 
Join Date: Jul 1999
Quote:
Originally Posted by Ferret Herder View Post
Just curious - would you tell the younger kid why s/he was conceived, or is your son old enough to figure that out himself (and thus spill the beans)?
I don't have children myself, but I always figured that if I were ever in such a situation, the story would be something like "we had always planned on having more kids long before X got sick—this just meant us having you a little earlier than we'd expected."

Last edited by Ranchoth; 06-29-2013 at 08:52 PM..
Reply With Quote
  #12  
Old 06-29-2013, 08:54 PM
Bridget Burke Bridget Burke is offline
Charter Member
 
Join Date: Jun 2003
Location: Houston
Posts: 6,956
The American Academy of Pediatrics published a policy statement on Children as Hematopoietic Stem Cell Donors. The summary of this detailed paper:

Quote:
Children who are medically appropriate potential donors may ethically serve as hematopoietic stem cell donors if 5 criteria are fulfilled: (1) there is no medically equivalent histocompatible adult relative who is willing and able to donate; (2) there is a strong personal and emotionally positive relationship between the donor and recipient; (3) there is a reasonable likelihood that the recipient will benefit; (4) the clinical, emotional, and psychosocial risks to the donor are minimized and are reasonable in relation to the benefits expected to accrue to the donor and to the recipient; and (5) parental permission and, when appropriate, child assent are obtained.
Donor advocates are recommended for minor candidate donors. These professionals are not on the patient's treatment team and their involvement should begin when testing the potential donors is considered. Donating bone marrow or peripheral blood stems cells can cause rare problems; donating organs is quite a different matter. Donating cord blood causes no problems at all; obviously, the parents make that decision.

One Doper mentioned conflicted feelings while being tested as a potential donor. There should have been somebody there he or she could have talked to....

Last edited by Bridget Burke; 06-29-2013 at 08:57 PM..
Reply With Quote
  #13  
Old 06-29-2013, 08:55 PM
monstro monstro is offline
Guest
 
Join Date: Mar 2002
Quote:
Originally Posted by Manda JO View Post

And, frankly, if my son needed a donor and none could be found I'd be at the fertility clinic the NEXT DAY. I wouldn't have the slightest qualm about that.
But it's not the parents' qualms that are at the crux of the matter--but rather than kid's.

The question is not a trivial one. I don't know how someone can be in favor of personal freedom and privacy and yet not be troubled by the idea of parents using one kid as spare parts for another.

Like you, I don't know what a good alternative would be. But it still bothers me that a kid would feel compelled to put their own life at risk, not out of love for an older sibling (who they may or may not have fond feelings for), but so that everyone will love them.
Reply With Quote
  #14  
Old 06-29-2013, 09:11 PM
Manda JO Manda JO is offline
Charter Member
 
Join Date: Jul 1999
Posts: 8,734
Quote:
Originally Posted by monstro View Post
But it's not the parents' qualms that are at the crux of the matter--but rather than kid's.

The question is not a trivial one. I don't know how someone can be in favor of personal freedom and privacy and yet not be troubled by the idea of parents using one kid as spare parts for another.

Like you, I don't know what a good alternative would be. But it still bothers me that a kid would feel compelled to put their own life at risk, not out of love for an older sibling (who they may or may not have fond feelings for), but so that everyone will love them.
When I put Little Johnny in the car to ride along while I take his sister to soccer practice, I am putting his life at risk. Is the risk of death from a bone marrow donation really that much greater?
Reply With Quote
  #15  
Old 06-29-2013, 10:03 PM
monstro monstro is offline
Guest
 
Join Date: Mar 2002
Quote:
Originally Posted by Manda JO View Post
When I put Little Johnny in the car to ride along while I take his sister to soccer practice, I am putting his life at risk. Is the risk of death from a bone marrow donation really that much greater?
There's a difference between major surgery and riding in a car. If there wasn't, doctors wouldn't make a big deal of having informed consent from their patients before operating.

And if the risk ain't no biggie to you, would you be in favor of mandatory bone marrow and organ donation? I wouldn't be. I plan to donate my organs after I die, but I don't want anyone calling dibs on any of them before then.
Reply With Quote
  #16  
Old 06-29-2013, 10:23 PM
Manda JO Manda JO is offline
Charter Member
 
Join Date: Jul 1999
Posts: 8,734
Quote:
Originally Posted by monstro View Post
There's a difference between major surgery and riding in a car. If there wasn't, doctors wouldn't make a big deal of having informed consent from their patients before operating.

And if the risk ain't no biggie to you, would you be in favor of mandatory bone marrow and organ donation? I wouldn't be. I plan to donate my organs after I die, but I don't want anyone calling dibs on any of them before then.
I am fine with parents deciding whether or not to donate a child's organs and or marrow.
Reply With Quote
  #17  
Old 06-29-2013, 10:31 PM
monstro monstro is offline
Guest
 
Join Date: Mar 2002
Quote:
Originally Posted by Manda JO View Post
I am fine with parents deciding whether or not to donate a child's organs and or marrow.
Not to keep picking on you, but would it matter to you if the recipient was unknown to the child? Or if they were the child's classmate or an acquaintance at church?

If you had a child that was adamant about not going under the knife, what would you do?

Last edited by monstro; 06-29-2013 at 10:31 PM..
Reply With Quote
  #18  
Old 06-29-2013, 10:46 PM
Manda JO Manda JO is offline
Charter Member
 
Join Date: Jul 1999
Posts: 8,734
I honest to god don't know what I'd do, which is why I would think parents should be the ones to decide. What I chose to do would have a lot to do with how I thought the kid would feel about it later in life. I wouldn't let a three year old's fear of the hospital mean her daddy died, because I think she'd regret that later. As the relationships get murkier and the children get older, it gets more complicated. But if not the parents, who?

I mean, really, if you were talking to a woman and it came up she had terminal cancer and hadn't let her kids be tested as matches because there is a 1.3% of "serious complications" and they were scared, and so she thought it would just be better for them if she upped and died and left them to live their own life--would you really walk away thinking 'Yep, that woman is doing right for her kids. It's nice to see a mom who isn't a selfish bitch for once"?

My husband has a horrible genetic disease. It's probably worse than it could have been because the drug to treat it tastes awful and he fought his mom about taking it and she, guilt ridden over giving him the disease in the first place, often backed down. Was that good parenting?
Reply With Quote
  #19  
Old 06-29-2013, 11:04 PM
monstro monstro is offline
Guest
 
Join Date: Mar 2002
Quote:
Originally Posted by Manda JO View Post

I mean, really, if you were talking to a woman and it came up she had terminal cancer and hadn't let her kids be tested as matches because there is a 1.3% of "serious complications" and they were scared, and so she thought it would just be better for them if she upped and died and left them to live their own life--would you really walk away thinking 'Yep, that woman is doing right for her kids. It's nice to see a mom who isn't a selfish bitch for once"?
In the case of bone marrow, I would have few qualms too. But the risk of complications is upped with organ donation. So I can say that while I would have no problem strongly encouraging my imaginary kid to donate his bone marrow, I would be more twisted up inside if it came down to, say, a kidney.

In the case of the hypothetical, I would try my best not to judge the mother's decision. I don't have to have an opinion on everything. Especially when it's a decision I would never have to make.
Reply With Quote
  #20  
Old 06-29-2013, 11:47 PM
Lord Feldon Lord Feldon is online now
Guest
 
Join Date: Dec 2010
Quote:
Originally Posted by Rachellelogram View Post
Does it matter if the child refusing is 5, or 12, or 17 and 364 days old?
Yes, or at least sometimes. In many places, older children have a right to refuse consent to treatment. The age varies.

Last edited by Lord Feldon; 06-29-2013 at 11:51 PM..
Reply With Quote
  #21  
Old 07-01-2013, 09:30 AM
Anaamika Anaamika is offline
Guest
 
Join Date: Nov 2001
Quote:
Originally Posted by Manda JO View Post
I am fine with parents deciding whether or not to donate a child's organs and or marrow.
What about over and over again? What if the other child needs repeated donations, like in My Sister's Keeper. What if the second child, the spare-parts child, is expected to have to just keep on giving and giving and giving?

Moreover, when the first child is old enough to realize what's going on, you should consider her feelings, too. Not all people will be so selfish as to not feel even a little guilty when their perfectly healthy sibling is once again asked to give up time, health, maybe even not allowed to do some fun things because it might endanger her health, in order to save it for the other child.

I am not comfortable with it one bit and when I read My Sister's Keeper I came down firmly on the other side from the parents. But they were terrible parents, too, and made clear in every way to their other children they were only second best, if that.
Reply With Quote
  #22  
Old 07-01-2013, 09:37 AM
aNewLeaf aNewLeaf is offline
Guest
 
Join Date: Dec 2012
Children basically are property under US law.
Only way for a minor to override parental health care decisions is through emancipation.
In some states, a young woman stops being a child if she gives birth.
Other places, and for males, it pretty much takes a court order.

The hospital taking the organs will have a social worker, and of course the staff are human.
So actual abuses are relatively rare- but there are plenty of questionable cases.

I worked in a hospital and saw a related problem, children kept alive who (imho) should have been allowed to die. I understand how hard it must be for a parent to be in that position, but please, if it ever happens to any of you, please make the kind decision. Choose to end the suffering.
Reply With Quote
  #23  
Old 07-01-2013, 09:47 AM
Manda JO Manda JO is offline
Charter Member
 
Join Date: Jul 1999
Posts: 8,734
Quote:
Originally Posted by Anaamika View Post
What about over and over again? What if the other child needs repeated donations, like in My Sister's Keeper. What if the second child, the spare-parts child, is expected to have to just keep on giving and giving and giving?

Moreover, when the first child is old enough to realize what's going on, you should consider her feelings, too. Not all people will be so selfish as to not feel even a little guilty when their perfectly healthy sibling is once again asked to give up time, health, maybe even not allowed to do some fun things because it might endanger her health, in order to save it for the other child.

I am not comfortable with it one bit and when I read My Sister's Keeper I came down firmly on the other side from the parents. But they were terrible parents, too, and made clear in every way to their other children they were only second best, if that.
Some kids need more than others. My god, look at cases where parents have one neuro-typical child and one developmentally disabled kid. The "normal" kid will make sacrifices, give up fun stuff, have fewer resources every fucking day of their lives, over and over and over again. There's no preventing it. Does that mean that if the "normal" kid wants their sibling institutionalized so that they can have a semi-normal life, the parents should do it? Look at the toll a bi-polar kid has on their siblings, or a kid who is addicted to heroin, or any number of things.

Cancer is exotic, so it seems different, more serious, but it's not exotic when you have it. It's the only normal you have. My husband almost died of lymphoma when he was eight. They told him he was going to die. He had several major abdominal surgeries, a colostomy bag for months, had to get rid of the family dog, major radiation, brutal chemo. This was the 70s, they threw EVERYTHING at cancer. The most interesting thing about it, when he tells the story, is that from his point of view it was nothing, nothing, nothing compared to his parents' divorcing. Or even having to move from Chicago to Hicksville at 13. But because those kind of things are common, we feel like kids can get through them: they may not be good, but we accept that sometimes life sucks.

My god. Go look at the "roomate-like marriage" thread. No one in this day and age is expected to stay in a loveless but functional marriage to spare kids trauma, but you're supposed to let one kid die--literally sit by their bedside and hold their hands as they die--rather than put your other kid through medical procedures?

It's like any other lesser evil: you absolutely do what you can to mitigate the damage and the trauma and you take onto yourself whatever burdens you can to lessen what is on your kids.
Reply With Quote
  #24  
Old 07-01-2013, 12:01 PM
Bridget Burke Bridget Burke is offline
Charter Member
 
Join Date: Jun 2003
Location: Houston
Posts: 6,956
Wasn't My Sister's Keeper a novel before it was a movie? I'm reposting this link, which goes into great detail about minor hematopoietic stem cell donors--for those who are interested in a non-fiction approach to the subject.

Organ donation is a whole different thing. There can be complications from donating bone marrow or peripheral blood stem cells, but they are quite rare & much less serious than losing an irreplaceable organ.

Last edited by Bridget Burke; 07-01-2013 at 12:01 PM..
Reply With Quote
  #25  
Old 07-01-2013, 12:50 PM
Yllaria Yllaria is offline
Charter Member
 
Join Date: Nov 2001
Location: Stockton
Posts: 8,126
Just want to point out that bone marrow donation not only isn't major surgery, it often isn't surgery at all any more. Per the Mayo Clinic (as reported by CNN):
Quote:
Today the most common way of collecting the stem cells is by filtering them directly from your blood. Doctors call this procedure peripheral blood stem cell donation, but many people still refer to it as bone marrow donation, even though bone marrow isn't directly involved.
Yes, it's still no fun, but it's very safe and pretty much over when it's over.
Reply With Quote
  #26  
Old 07-01-2013, 12:54 PM
EmAnJ EmAnJ is offline
Guest
 
Join Date: Jan 2007
Quote:
Originally Posted by Yllaria View Post
Just want to point out that bone marrow donation not only isn't major surgery, it often isn't surgery at all any more. Per the Mayo Clinic (as reported by CNN):

Yes, it's still no fun, but it's very safe and pretty much over when it's over.
Yes, and this is how my sister donated. She had an IV in her carotid artery and they collected for about 12 hours. That was it.
Reply With Quote
  #27  
Old 07-02-2013, 12:58 AM
BigT BigT is online now
Guest
 
Join Date: Aug 2008
Quote:
Originally Posted by monstro View Post
The question is not a trivial one. I don't know how someone can be in favor of personal freedom and privacy and yet not be troubled by the idea of parents using one kid as spare parts for another.
Simple. That applies to adults, who can take care of themselves. Children cannot, and thus necessary delegate some of their freedom to their parents or caregivers.

Parents often have to make children do things that the children would rather not do. That's just the nature of things.

The question to me is the same as anything else a parent can make a child do: is it a form of abuse, or did the parent have to abuse the child to make them make them comply? If not, then it's okay.

I'd definitely say making the kid give bone marrow is not abuse. I guess it's possible to see major surgery as abuse, though, but I'm not sure it qualifies. The action would have be needlessly harmful to the child, and I just don't see it in most cases. I'd have to see the statistics to be sure, but my instincts are that it is less risky than many other things we make children do.
Reply With Quote
Reply



Bookmarks

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT -5. The time now is 03:42 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2014, vBulletin Solutions, Inc.

Send questions for Cecil Adams to: cecil@chicagoreader.com

Send comments about this website to: webmaster@straightdope.com

Terms of Use / Privacy Policy

Advertise on the Straight Dope!
(Your direct line to thousands of the smartest, hippest people on the planet, plus a few total dipsticks.)

Publishers - interested in subscribing to the Straight Dope?
Write to: sdsubscriptions@chicagoreader.com.

Copyright 2013 Sun-Times Media, LLC.