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Molly-Tx
Reply with quote  #1 
Someone with a national marrow donor program came to my daughter's college today....and convinced them to sign up to be a bone marrow donor.

When she came home she told me about it.  Then I told her of the horror stories that I had heard about and we looked it up together (one horror story below).  Plus, the woman told them that "being put to sleep" was easy and would not hurt them.  I explained to my daughter that there is risk with any anesthesia. 

I realize that we need people to assist with this program.  I just think it is wrong that they use the inexperience of 19 year olds to get them to sign up.

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Bone marrow donor risks identity mix up
               
  •                                                                                                                 27 October 2005
                               

IT SOUNDS like an open-and-shut case: a clear DNA match is made between semen from a serious sexual assault and a blood sample from a known criminal. Yet in a recent case from Alaska, the criminal in question was in jail when the assault took place. And forensic scientists had already matched the crime sample to the DNA profile of another person who was their prime suspect. It was only after careful detective work that the mystery was solved: the jailed man had received bone marrow from the suspect many years earlier.

                               

This week, at a meeting of the American Society of Human Genetics in Salt Lake City, Utah, Abirami Chidambaram of the Alaska State Scientific Crime Detection Laboratory in Anchorage described the case to highlight the danger of miscarriages of justice. Given the retribution that can be doled out to sex offenders by other jail inmates, the consequences could be severe. "If you implicate the wrong person, they can be killed in prison," says Chidambaram.

                                                               
                       
                                                                                                        As forensic DNA databases grow and more people undergo bone marrow transplants, the risk of a miscarriage of justice increases                                                
               
                               

When Chidambaram discovered the perplexing match, she initially thought there had been a sample mix-up. But there was no mistake. What's more, the jailed man and suspect shared the same surname.

                               

Because medical records are confidential, a detective had to make further enquiries among family and friends of the two men. That revealed that not only were the convict and suspect brothers, but the inmate had received a bone marrow transplant from his brother. As a result, his blood was populated with cells bearing his brother's DNA profile.

                               

It's an instance of life imitating art: in November 2004, US TV channel NBC broadcast an episode of Law and Order: Special victims unit in which a rapist nearly got away with his crimes because of a similar bone-marrow mix-up.

                               

The chances of cases like this arising are very low. But as forensic DNA databases expand, and more people undergo marrow transplants, the risk of a miscarriage of justice will increase. "It makes sense for investigators to be savvy to this," says David Lazer of Harvard University, who studies the policy issues surrounding forensic DNA testing.

                               

Until recently, bone marrow transplants involved destroying the patient's own bone marrow. In such cases their blood will contain the DNA profile of the donor alone. But some treatments in recent years, such as therapies to treat sickle cell disease, retain some of the patient's original bone marrow, so their blood can contain a mixed DNA profile.

                               

Mixed profiles can also occur when DNA is collected from swabs taken from the inside of the cheek, rather than blood samples. This practice is already standard in the UK and is increasingly being used by US police.

                               

Cheek cells of a bone marrow recipient will contain mostly their own DNA, but can become contaminated with the donor's DNA over time. So police may have to check both blood and cheek samples to be sure of spotting a transplant recipient.

                               

Lazer believes it would cost too much to routinely check both types of sample to confirm whether a suspect has received a bone marrow transplant, and Helen Ng, spokeswoman for the US National Marrow Donor Program, based in Minneapolis, stresses that it would happen only very rarely. "I hope it doesn't prevent people giving patients what they need," she says.

                               

But Chidambaram argues that potential marrow donors should be informed of the small risk of their DNA profile turning up in a crime database if the recipient later commits an offence.


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momified
Reply with quote  #2 
I wouldn't advise anyone to be a donor for anything. Not because I am mean, well maybe I am, but because the world is getting crazier by the minute. I know this will make me sound really old, well I am pretty old, but I am horrified sometimes by modern medicine. Oh of course there are great miracles and life-saving surgery, etc. But I am very very skeptical and I believe in staying far away from hospitals except for extreme emergencies.

They make an awful lot of mistakes in hospitals, and they are full of super-germs. Yes, someone has to be a donor for bone marrow, etc., I guess, but I wouldn't let my daughter, if I had one.

I also think it's dangerous to be an organ donor, because they start cutting the instant they suspect you might be dead. I saw a news story about this, where the patient started to wake up and waved to the nurse, who notified the doctor. The doctor kept brushing her off, but fortunately she got his attention eventually.
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Melissa
Reply with quote  #3 
Well, I would never push anyone to be a donor, and I can understand, as a parent, how you feel.

But I might not be alive today had not an unknown 35-year-old man  donated his peripheral blood cells so that I could have a transplant to cure my acute lymphoblastic leukemia.  It'll be a year in Deceember and I am doing well.

I am amazed and humbled that there are people such as him.  I consider them angels on earth.  i am also so grateful to those who give blood.

BTW, you don't have to actually give your bone marrow or be anesthetized- you can go the peripheral blood way, which involves a series of injections to boost your white cell count, followed by an IV extraction of blood cells.

And, yes, I am aware that I can now commit the perfect crime- I am a 56-year-old woman with the DNA of a 35-year-old man!

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gracenotes
Reply with quote  #4 
A friend donated, and I think she did the IV way.  I do not remember her saying she was anesthezed.  She also give blood frequently.  Because of her bone marrow donation, which she described as "no big deal", a child was able to receive the marrow and, last I heard, is doing fine. 

I guess these are the kinds of things I need to think about doing at some time in my life.  It could really make a difference. 

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Molly-Tx
Reply with quote  #5 
I think that it is GREAT that there are people who give....but my young daughter is just starting out her life and career...I just think that they should have told her about the "negative things" that could happen.

The woman called me tonight from the clinic...I explained that our daughter now has had a chance to make a "more informed decision"....she quoted some statistics about the anesthesia being no problem in nearly 90% of the cases...and admitted she did not know anything about the above case.

Once people are "informed correctly" and still want to do this...I think it is a wonderful gift of love...but, they need to tell the "whole truth" when they are convincing people to do this...so it is truly an informed choice.

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gracenotes
Reply with quote  #6 
Molly,

I totally agree.  After I posted this and ran out for the evening, I decided that my response really totally ignored your concern, even though my friend had a positive experience with her donation. 

I spend most of my days around young people in their late teens and early 20's, and, especially in this ever-more-complex world, they need to have all the information before consenting to something like this and really understand.  There's just so much more to know and understand in the world at that age then for someone who is now older but grew up in less complex times. 

I personally do not think anesthesia is healthy for anyone at any age, its just something that is necessary at times, and the pros and cons of making a decision need to be weighed after full consideration of the information.  Even if is is OK for 90% of people, I think the 10% is kind of a large number to consider potential problems.
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Lynn from Oz
Reply with quote  #7 
Dear Molly,
I have been on a bone marrow donor register for about 15 years ( may be more!)and so far have not been called up at all -not  even to go for a further evaluation.
It is probably very unlikely that your daughter would be called up as a donor and it may be years from now anyway. The blood donor way sounds like a better choice rather than the anaesthetic.
Cheers,
Lynn

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Melissa
Reply with quote  #8 
Molly, the woman who tried to recruit your daughter sounds very ill-informed.  How could she not know that many of these procedures do not involve bone marrow nor anesthesia?  Plus she doesn't seem to know much about the risks of anesthesia.   Having said that, I respect your decision not to go along with it- I'm a very cautious mom myself.

Grace, so many thanks for registering!  You have no idea how much you are appreciated.

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MollyTx
Reply with quote  #9 
Gracenotes, Lynn and Melissa...thanks for your input...I do see both sides.  Our position is that our daughter wants to work for the govt in the future...and this could be a "real" problem with her background check, etc.

Here is some more info (which our daughter took to the school today) to try to retrieve her consent form:

1.  On their website, they state that there are one to four incisions on each side for the extraction. They state that the risks are 1.34% of donors experience a serious complication due to anesthesia or damage to bone, nerve or muscle in their hip region (this was not listed on their brochure which they gave to the students)...the brochure state that the risks are "bruising around the site of the blood draw, infection at the puncture site, or more rarely, fainting."  (not enough of the real risks for an informed choice).

2.  A living donors online site states that the donor is under anesthesia for 60 - 90 minutes.....or that it could be done with a local anesthesia.  But, there are 4 to 8 incisions made into the site with a large hollow needle...thus resulting in bruising and pain for weeks (such as from a bad fall on concrete).  It states that pain is a certainty.  Infection is possible.  And, a possibility of an allergic reaction to the anesthesia.

3.  Another site (medical site) reports of "sciatic nerve compression following bone marrow harvest where a 44 year old man.  On the third post-operative day, the donor had the sciatic pain...it took him 7 weeks (after lots of bed rest) to have only mild pain...subsequently he made a full recovery.

My daughter would have to continue to go to college with these problems.

Our problem now:  They are "refusing" to give back our daughter's signed consent and info.  The woman from the bone marrow place told me that "this is ridiculous".  I told her, and my daughter told her, that she consented with a full range of info to make an "informed consent".  She refuses to give back the info.  So, daughter has gone to the Dean of the College who agrees with us....hopefully, we will get the papers today...

So, once you sign, they do NOT let you opt out (as they say) easily.  Worse, your info is on a worldwide computer.



3. 

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Melissa
Reply with quote  #10 
I truly don't understand why they don't mention PBSCT, the peripheral blood transplant, which is just as effective, with much less risk and wear and tear on the donor.
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Melissa
Reply with quote  #11 
Also, it is utter BS that they won't give the consent form back.  I would definitely fight that.  But, in any case, nobody can force you to donate against your will, no matter what you've signed.
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Molly-Tx
Reply with quote  #12 
correction...my above post...should say...." told her, and my daughter told her, that she consented withOUT a full range of info to make an "informed consent".
*********************************************************
Well, it looks like my lawyer will drive over there and get it......If that happens, I will write all kinds of letters to their national and state offices...this young lady is young, too, and they have put her out there as an employee without ALL the info that she needs to do this job. 

Their brochure needs to be changed....acknowledging identity mixups as well as risks of surgery and injury to the body.


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Molly-Tx
Reply with quote  #13 
It makes me wonder....WHAT is on that consent form that they do not want us to see?
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Jean
Reply with quote  #14 
I understand that you're just trying to put some alternate information out there and I appreciate that.  But please do not discourage anyone from registering because of a negative experience you had with one person.  We've all had an experience with someone who did not represent a company or cause very well.

I was recently called as a match for a 16 year old girl who was about to die.  I was absolutely proud to be able to give her a shot at beating a terminal illness.  The registry rep was up front with me about all of the risks and provided the opportunity for me to speak with every doctor that would be involved, especially the Anesthesiologist.  It took over two years before I was called, and I registered on a college campus just like your daughter.  I just donated last Friday and am feeling mighty fine less than 2 weeks later.

I believe the main reason that there is so much mystery and misinformation out there about this procedure is it is still fairly uncommon.  Which is odd considering how many of us are touched by Cancer- one of the main terminal illnesses that BMTs are used for.  It's uncommon because people are already scared of getting registered.  Most people think it's painful to get registered.  It's not.  They swab your cheek.

I agree that a rep from that organization should be absolutely forthcoming and transparent with all benefits and risks.  If you have a problem with the lady that signed your daughter up you need to talk to her supervisor instead of discouraging people from helping dying people... it could be you on that waiting list someday.
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Jean
Reply with quote  #15 
They do mention PBSC.  Whether they use bone marrow or PBSC depends on the needs of the patient.  Please do not forget about the patients.  This is their last hope.  I've thanked God every day since I got the call that I registered that day on campus instead of walking on by...
http://www.marrow.org/DONOR/Donor_Advocacy_Program/index.html

Just thought you might like to hear from someone who experienced this full circle.  Most of what I hear in these posts sounds like urban legend.  Take it for what you will.  Please do not delete my 2 posts because they do not support your opinion.

Thank you.

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