Bone marrow donation

[metamorph]

I wonder if anyone of you donated bone marrow. I was thinking of doing it (getting registered that is). Yet, one thing that sits uneasy with me is the fact that I have to provide a DNA sample. I know it sounds silly. But I also know that data is never really secure (other people/organisations could get my DNA sample into their hands), and there is so much you could potentially read in that DNA sample (let alone the things you could do with it in the future). I know it probably sounds paranoid, but I just don't want some health insurance agencies, the CIA or some other corrupt and dodgy business to get access to my DNA (as you know I don't agree with Steve's "privacy is an outdated concept" philosophy).
Another thing that may develop into a moral predicament, is that I would feel obliged to actually donate the bone marrow if it was needed. Just imagine you get a call that some child badly needs your particular bone marrow to survive...

[elucidate]

I've never considered this to be honest.

I am registered as an organ donor though, so they can take what they need once I'm gone. I won't need it anymore, and it won't matter who has that information of my DNA.

[ssandra]

I hadn't considered it, but I am considering it now...

But maybe I should start with donating blood... since I am over my fear of needles now..

[Johnny Skosnik]

First, I commend your decision. Offering a part of your own body so that others may live is a huge gift. You're sure to get some good karma from it.

I've worked at a organ donation agency for five years, I have knowledge of how it works. You're considering being what's know as a "living donor". It sounds like you have two concerns:

Originally Posted by metamorph

one thing that sits uneasy with me is the fact that I have to provide a DNA sample. I know it sounds silly. But I also know that data is never really secure (other people/organisations could get my DNA sample into their hands), and there is so much you could potentially read in that DNA sample (let alone the things you could do with it in the future)

I'm in the United States and noticed your location reads "UK". Here in the states we have good privacy laws protecting health records including DNA. (If you'd like details search "HIPAA") There's an excellent website that details the organ and tissue process here at UNOS. I'm unsure what the laws are in the UK but, given Europe's even better stance on privacy, I image it's even safer. I encourage you to research further, this may be a good first step.

Originally Posted by metamorph

Another thing that may develop into a moral predicament, is that I would feel obliged to actually donate the bone marrow if it was needed. Just imagine you get a call that some child badly needs your particular bone marrow to survive...

It's certainly up to you whether you wish to donate marrow, it's your body after all. As I recall marrow donation is a fairly involved procedure, you probably don't want to do it the day before your wedding . This site and particularly these answers may reassure you.

To summarize: your desire in commendable, your concerns are fair. Research more about the gift of marrow donation and reach a decision, but certainly don't reject the idea out-of-hand.

[Brutha]

I'm in the United States and noticed your location reads "UK". Here in the states we have good privacy laws protecting health records including DNA. (If you'd like details search "HIPAA")

If the US would be a nation of laws that would be fine.
If the CIA however would use those record they would simply say it's a national security secret and that the courts aren't allowed to review their actions.

There also the issue of what the heck people mean when they say they publish anonymised DNA samples.

If the CIA wants to the could simply take an DNA sample of everyone who goes through the US border.

The UK police had for a long time the right to take a DNA sample from anyone they investigate and store that sample in long term in their database. With the new UK government I don't know whether they still have the right and whether they have trashed the old database.

In the end political will is the only thin that will prevent abuse of your DNA data whether or not you will give that data as bone marrow spender.

[metamorph]

Originally Posted by Johnny Skosnik

To summarize: your desire in commendable, your concerns are fair. Research more about the gift of marrow donation and reach a decision, but certainly don't reject the idea out-of-hand.

Thanks a lot, Johnny, for the links and your opinion. I am still undecided. I do feel a bit like brutha about it. I think the concept of privacy is really an illusion when it comes to organisations like the CIA. My take: once the data exists in electronic form in any database, it will be accessible to Langley (and probably other dodgy businesses).

Still not sure what to do. I guess I will have to digest it a bit. It is really different from donating blood, in that you choose when you donate the blood, and then it is over. But, being suddenly confronted with a call that someone badly needs my marrow is different (whether it is on the day before my marriage or not)....

Originally Posted by Brutha

If the CIA however would use those record they would simply say it's a national security secret and that the courts aren't allowed to review their actions.

In the end political will is the only thin that will prevent abuse of your DNA data whether or not you will give that data as bone marrow spender.

[Federer]

Originally Posted by metamorph

I wonder if anyone of you donated bone marrow. I was thinking of doing it (getting registered that is). Yet, one thing that sits uneasy with me is the fact that I have to provide a DNA sample. I know it sounds silly. But I also know that data is never really secure (other people/organisations could get my DNA sample into their hands), and there is so much you could potentially read in that DNA sample (let alone the things you could do with it in the future). I know it probably sounds paranoid, but I just don't want some health insurance agencies, the CIA or some other corrupt and dodgy business to get access to my DNA (as you know I don't agree with Steve's "privacy is an outdated concept" philosophy).
Another thing that may develop into a moral predicament, is that I would feel obliged to actually donate the bone marrow if it was needed. Just imagine you get a call that some child badly needs your particular bone marrow to survive...

Whoever donates bone-marrow has super-duper big heart!

[TaritaB]

Originally Posted by metamorph

I wonder if anyone of you donated bone marrow. I was thinking of doing it (getting registered that is). Yet, one thing that sits uneasy with me is the fact that I have to provide a DNA sample. I know it sounds silly. But I also know that data is never really secure (other people/organisations could get my DNA sample into their hands), and there is so much you could potentially read in that DNA sample (let alone the things you could do with it in the future). I know it probably sounds paranoid, but I just don't want some health insurance agencies, the CIA or some other corrupt and dodgy business to get access to my DNA (as you know I don't agree with Steve's "privacy is an outdated concept" philosophy).
Another thing that may develop into a moral predicament, is that I would feel obliged to actually donate the bone marrow if it was needed. Just imagine you get a call that some child badly needs your particular bone marrow to survive...

Hi...

I was doing some research on support resources for matched marrow donors and came across your post. I'd like to answer it, if I may?

I matched as a donor and donated marrow (stem cells) three times for one patient between October 2000 and July 2001. For the past several years, I have also been active in donor recruitment and education.

It is a bit misleading to characterize the testing as DNA sampling. It is no more so than when you have a blood test at your doctor's office. Sure, they could probably pull a whole DNA sequencing if they wanted to, but it is unnecessary (not to mention vastly expensive and time consuming). The saliva sample you give for registration sure does look like a DNA swabbing, too, doesn't it? In reality, they are HLA typing. This involves finding 6 specific antigens on the surface of the white blood cells. It does not involve a DNA profile. Once that test is run and your markers are identified, the numbers are entered into a computer database. At the time you fill out your paperwork and give your saliva sample, a barcode is on the swabs and stickers matching that barcode are put on your paperwork (both what you keep and what goes in for processing). Anyone searching the registry to make a match will see your HLA type and your barcode number, nothing else. Should your HLA type be what they are seeking, other non identifying information can be pulled up...age and gender basically. For any patient in need of a transplant, there might be one match in the registry, there might be five, there might be a hundred...or there might be none. If there are multiple matches/partial matches, they'll look first for young healthy men, then young women who have never given birth, and so on.

Should you be identified (by numbers) as a potential match for a patient AND as a match they would like to contact, then someone with the clearance to do so would be able to pull up your name and contact information. You would then get a phone call or a letter stating that you are a potential match, giving you the age/gender/illness of the patient, and asking you to consent to further testing.

If you consent to further testing, you will be asked for a few blood samples. This is to confirm the first HLA typing (to verify that there was no mix up in data entry), and to verify your health as well as a few other tests that can indicate whether or not your cells would be good donor cells for this specific patient.

You will then be confirmed as a match and asked to consent to donating, or you will be told that you are not a good match for this patient.

They don't keep a DNA profile of you...they don't even create one.

Not all patients in need of transplant are children. My recipient was, at the time, 30 years old and a couple of years older than I was.

It was totally worth it, and I'd do it again with hesitation. It was painless...all you have to do is show up and lay there.

[James81]

Your hairdresser has access to your DNA. Anybody that wants your DNA can get it at any time, and you would be none-the-wiser.

The idea of donating bone marrow skeeves me out beyond belief. Holy crap.

[AlmostGodess]

Metamorph, isn't your fear of sharing your DNA a fear about sharing yourself? Do you see a conflict here with wanting to make a bone marrow donation? How do these two go together?

[metamorph]

Originally Posted by TaritaB

Hi...

I was doing some research on support resources for matched marrow donors and came across your post. I'd like to answer it, if I may?

Thanks a lot for your post. I am 95% there internally. There is a good chance I will do it in the next few years.

[metamorph]

Originally Posted by AlmostGodess

Metamorph, isn't your fear of sharing your DNA a fear about sharing yourself? Do you see a conflict here with wanting to make a bone marrow donation? How do these two go together?

Do you mean sharing parts of my body? I have donated blood before. If you mean personal information: it is not a fear. I really want to be responsible (and as much as this is possible nowadays) in control of what info I share and with whom.

[TaritaB]

Originally Posted by metamorph

Thanks a lot for your post. I am 95% there internally. There is a good chance I will do it in the next few years.

:-) You're welcome. You do it when you're ready, and there's no shame in not registering. The registries would rather have 100 people who are absolutely committed to donating (should they match) than have a million people who aren't sure they'd actually donate.

You have about a 1 in 60,000 chance of matching someone. And, even if you match...if there are other matches you might not be the person called. Many people are in the registry for decades and never match, others match almost right away.

If you have any questions, please feel free to ask!