marrow donation- privacy concerns?

[stat3113]

I was considering signing up for the national blood marrow registry.

The biggest negative though is that they do an oral swab for DNA and they store it in their database for 40 years in case there's a match. I don't trust the government with my DNA for 40 years, especially these days, Patriot Act, etc. Normally, the government would need a warrant to get my DNA, and I feel insecure just giving it up to them.

Does anyone know if the National Marrow Registry has safeguards to prevent abuses of power like that?

Give me your thoughts.

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[QofQuimica]

I was considering signing up for the national blood marrow registry.

The biggest negative though is that they do an oral swab for DNA and they store it in their database for 40 years in case there's a match. I don't trust the government with my DNA for 40 years, especially these days, Patriot Act, etc. Normally, the government would need a warrant to get my DNA, and I feel insecure just giving it up to them.

Does anyone know if the National Marrow Registry has safeguards to prevent abuses of power like that?

Give me your thoughts.

Here's their confidentiality info: http://www.marrow.org/ABOUT/Maintaining_Confidentiality/Maintaining_Donor_and_Patient_/index.html

 

[OncoCaP]

I was considering signing up for the national blood marrow registry.

The biggest negative though is that they do an oral swab for DNA and they store it in their database for 40 years in case there's a match. I don't trust the government with my DNA for 40 years, especially these days, Patriot Act, etc. Normally, the government would need a warrant to get my DNA, and I feel insecure just giving it up to them.

Does anyone know if the National Marrow Registry has safeguards to prevent abuses of power like that?

Give me your thoughts.

This is an offtopic post -- there is an offtopic forum for this kind of thing. I'm not sure why you posted this question here. This thread might get moved, so look for that possible change.

As far as your actual question is concerned, your information is kept private: http://www.marrow.org/ABOUT/Maintaining_Confidentiality/Maintaining_Donor_and_Patient_/index.html

Your information is protected by law, so unless the laws change, the "government" can't just get your DNA without a warrant (and even then it might be very difficult for them to get it from the Marrow Donor program). That being said, every day your body sheds cells with DNA, so it wouldn't be hard for someone to get your DNA privately. In other words, if you are trying to keep your DNA secret, you would need to take some pretty extreme measures that you are almost certainly not going to want to do. If the government was "out to get you" they could get your DNA easily.

http://www.dna.gov/basics/evidence_collection
In 1997, two women from Florida were victims of sexual assault and robbery. One year later, the police developed a suspect. Plain-clothed police officers monitored the suspect for months looking for clues that would build their case. During surveillance, the officers saw the suspect spit on the street. One of the officers grabbed a napkin and collected the spittle. The saliva, which contained cells, provided enough DNA evidence to charge the man with the two attacks. (View and hear demonstration from What Every Law Enforcement Officer Should Know About DNA Evidence).

 

[OncoCaP]

Why is this posted in multiple forums (like allo?)?

 

[QofQuimica]

Why is this posted in multiple forums (like allo?)?

Because we need people to report multiple postings to us; we can't keep up with them all without help from users. I've merged the two threads. OP, please do not cross post the same thread in multiple forums. Pick one forum and post it there.

 

[mave]

Sign up!

 

[kypdurron5]

Wow!! They have the gall to make you PAY to sign up as a potential donor! That's simply amazing. You can donate plasma (2-3 total hrs/wk) and get about $50/wk, donate blood (<1 hr) and get a free t-shirt, or you can sign up for a major medical procedure by PAYING $52. Possible redeeming factor...it looks like my local blood donation center does local sample collection, and since their website doesn't mention paying anything it's possible that they "sponsor" the fee. I actually will check into this tomorrow; just think about what being matched/donating marrow would do for a medical school application! (yes, I'm a very bad person)

 

[Disinence2]

If you really want to get in you should donate a kidney! If you're gonna do something, Do it right.

 

[mave]

They make you pay (but only sometimes... if your drive is a cheek swab drive, it is either free or much cheaper, and if there is grant funding, the fingerstick tests too) because the HLA typing tests are expensive, and for no good reason, there's not very much funding at the federal level, and the program isn't nearly as well-established as the Red Cross.

Plus, there are fees involved with cataloging, and I'm pretty sure that there are some collections taken to provide transplants for people without the necessary insurance. Marrow donations involve the medical costs of two people and transportation of the marrow (sometimes from great distances), and can cost upwards of $250,000.

It's a really great opportunity that you should take advantage of. You never know who's going to need your marrow to live. I work at an overnight camp for children with cancer and blood disorders every year, and we had two siblings with a rare blood disorder. One got a perfect 6/6 HLA match from a woman in Sweden, and is five years post-transplant. The other had a 5/6 match from Oregon and is about 6 months post-transplant. Really great stories come out of it, and it's totally worth it.

 

[kypdurron5]

I do not doubt the substantial costs involved or the benefits of donating, but it's a little much to expect that people will be willing to spend that kind of money to simply be thrown into a pool of 6 million + others. Not only that, my understanding is that marrow donation is a very unpleasant procedure. It just seems a bit much to expect people to foot the bill for a $52 lottery ticket with the jackpot being pain and suffering (and yes, warm fuzzy feelings of altruism).

Still, I agree that it would be an incredible way to be involved in saving someone's life without giving up an organ >). It's definitely worth checking into!

 

[mave]

I guess I've always looked at it more as the chance to save someone else's kid or mom or sister, and I'd like to know that if I or someone I cared about needed it, other people would do the same. Fifty-two bucks is less than the cost of most secondaries, and the contribution has the potential to last a lot longer

 

[epigastric]

When there have been bone marrow drives held in my area, they stated that while most Caucasians have to register, the fee is waived/subsidized for many minorities (to increase rarer types in the donor pool). So if you're considering registering, are put off by the fee and happen to be non-Caucasian, ask around to see if they waive the fee for you.

 

[ryanl]

I was considering signing up for the national blood marrow registry.

The biggest negative though is that they do an oral swab for DNA and they store it in their database for 40 years in case there's a match. I don't trust the government with my DNA for 40 years, especially these days, Patriot Act, etc. Normally, the government would need a warrant to get my DNA, and I feel insecure just giving it up to them.

Does anyone know if the National Marrow Registry has safeguards to prevent abuses of power like that?

Give me your thoughts.

I had read this thread back a week or so ago when it was posted. Well I was watching NCIS, one of those crime dramas on TV. And they were trying to figure out whose DNA was on a piece of evidence. They said they were going to search some of the more unusual databases and found a match in a marrow donor database. This is a TV show, so take it for what it is, but i'd say there is a fairly good chance that your info would be available to someone in law enforcement/nat'l security....

 

[kypdurron5]

I had read this thread back a week or so ago when it was posted. Well I was watching NCIS, one of those crime dramas on TV. And they were trying to figure out whose DNA was on a piece of evidence. They said they were going to search some of the more unusual databases and found a match in a marrow donor database. This is a TV show, so take it for what it is, but i'd say there is a fairly good chance that your info would be available to someone in law enforcement/nat'l security....

Yes, but Abby and McGee(k) are always hacking into stuff >). I watch WAY too much TV .

 

[Critical Mass]

Why don't you want people accessing your DNA?

Is there something you're not telling us?

You can't have my SDN DNA...Then you'd know who I used to be.

 

[ryanl]

I wouldn't want my dna public for the same reason I don't want my phone records, my house to be searched, my library records and any other personal info to be available unless there is a compelling reason for someone to Need it. And if that is the case, a search warrant can be issued.

It's not that I'm doing anything wrong, it's just that i enjoy privacy.