Amit Gupta hasn't found a marrow transplant match; today's your last chance.
amitguptaneedsyou.com
amitguptaneedsyou.com
The irony with this is that the men who are honest about having sex with men are also more likely to be aware of their HIV status than men who lie at the blood bank.
I feel the same as nostromo every time I am asked to give blood. I know I'm HIV-negative. I'm not South Asian, so I couldn't help Amit anyway.
Certainly in the UK, where there is no benefit for giving blood, I can only assume that those who lie about it are doing so because they too know (or 100% believe, possibly incorrectly) that they are clean, and they don't want what they see as pointless policy to prevent them from helping others.
Here's the problem with just saying "are you clean?" You could be in a long-term committed monogamous man-man relationship, and therefore believe you are completely safe. However, the fact that you trust your partner not to cheat on you does not mean that health authorities can trust him not to have cheated on you. So even if the person being asked is completely telling the truth, they might be wrong.
Isn't the only real reason to lie because you're doing it for yourself and not really to try and help other people?
I believed at the time this was due to the UK CJD scare. Can anyone confirm?
My gf at the time, also reported being denied the opportunity to give blood, after declaring on the form that she was in a relationship with a UK national.
The marrow guys could even cover the cost of the STD screen for people who register for the program.
Seems to me this would be an even safer way of ensuring potential donors don't have HIV than just asking them about their sex lives...
What's that? It now sound horribly offensive, erroneous, and bad policy? Well sorry about that! Gotta be consistent you know.
(I'm not black or a woman, but am gay - for my own selfish sake I'd love what you said to be true.)
I have no issue with gay people at all, and on an absolute numbers basis, infection rates are not terribly high within that overall community. I just find it immensely interesting how people's normal thought processes (even those who are normally extremely logical and data oriented) are fundamentally altered when the subject of discussion is race, gender, sexuality, or culture.
Thanks for pointing it out.
I'd agree with people who are okay with profiling if there wasn't a reliable test for HIV, or if there weren't enough resources to test for it, but I haven't found any evidence for either of those potential claims.
They are the ones that are most likely to have it and not know it or treat it and are also the ones to face the largest stigma in dealing with the issue.
That's the context; it was the time window after infection but before high confidence of the results in the mouth swab test, which is the standard method used in such circumstances (and also the cheapest).
Anyway, that is what I meant by it, and that's the report I was referring to when I said CDC. I didn't mean to say that gay people don't get it.
[1]http://healthland.time.com/2010/09/26/study-20-of-homosexual... [2]http://www.cdc.gov/hiv/topics/surveillance/resources/factshe...
This seems a lot more sane than "There's this group that we used to consider high risk for HIV. We're not willing to scientifically test for it. Are you a part of this group?"
Regarding the 3 months: the UK only just changed it from a lifetime ban for MSM to 12 months - they feel that 12 is safer, many people have argued that this is still over the top. I'm not a doctor, and I'm not well enough informed to tell you who is right on this. Countries that do have a lifetime ban certainly need their policies updated.
Regarding unprotected: the argument is that even protected sex isn't 100% safe. I don't have any stats to argue for either side here, and I don't have an opinion for that reason.
So, it's not entirely a case of "we can't be bothered to test", but at the same time many countries have out of date policies. And even those, like the UK, with better ones, there are still some people who argue they are too strict against MSM, and others who argue that any less strict would be too dangerous.
I could very well have had sex with 100 women in the past 3 months (as a man) and been unsafe with all of them. Yet, they don't seem to be the least bit worried about that scenario.
Having 100 random sexual encounters with randomly sampled women leaves you approximately a 50% chance of having unprotected sex with someone who has HIV. Not to mention, HIV may not even be transmitted even if you have an encounter.
On the other hand, after 100 random homosexual MSM encounters, your chances of having had unprotected sex with someone carrying HIV is 99.99997344%.
MSM puts you at a much higher risk for HIV. That's fact.
I suppose the idea is not to waste time and resources on ineligible donors, and it seems as though they've made the decision that profiling based on sexual orientation is the best balance between wasting time and resources tracking patients who are ineligible or will likely become ineligible and missing out on potential matches.
I just can't believe that an inclusive and scientific approach - don't profile, test at sign-up, test again at match - wouldn't yield more matches (and more positive goodwill, obviously). Then again I haven't seen the data...
So if the transfer can work with a 3 month delay (I'm not sure if it can, just assuming), and the HIV test comes back clean, you're going to have a 97% chance of a true-negative, 3% chance of false-negative.
At that point, comparing it to the odds that the "eliglble" donor is lying about their sexual activities or is simply HIV positive and heterosexual, the ban on letting gays register seems draconian, and a scientific test-based approach seems better all around.
Especially when you consider that if no donor is found, the patient could die anyway. So if the only donor is gay, test them, and then notify the patient of the 3% chance of contracting HIV from a false-negative patient versus the 100% odds of dying from Leukemia, and see what decision they make.
I probably screwed something up, but in any case you are definitely right that the false-negative odds are very low among all potential applicants. Really makes the argument against seem foolish.
1) http://www.cbsnews.com/8301-504763_162-57333212-10391704/cdc...
2) http://www.organtransplants.org/understanding/marrow/
3) http://www.wolframalpha.com/input/?i=%28%281%2F20000%29++*+%...
Donated blood is tested with PCR, which detects the HIV RNA. PCR test detects HIV in as quick as a couple of weeks.
However, because of the added cost (and time cost) of running PCR tests, donated blood samples are pooled before being tested. If the test runs positive, samples are tested individually.
How do you feel about lying?
If I absolutely know that I am safe, but the policy does not allow me to donate, then I would have no problem lying to save a life.
If I (and this is taking extra-wide margins) have not had any sexual contact in the past 12 months (or anything else that leads to something like HIV, such as needle use), and have always tested positive, then any doctor would confirm that, as long as I am telling the truth about this situation, I am definitely clean. And yet I would still be banned from donation. Do you really think that, in that scenario, it would be wrong to lie if I could specifically save somebody's life?
A lifetime ban is quite clearly over the top and not neccesary - hell, even with the UK's new 12 month waiting period after MSM activities for donating blood, there is scope for someone to have gone far past the window of "I might have HIV from that person and it isnt showing up yet", without having reached the 12 months required by policy.
I absolutely would not endorse lying in this situation, apart from anything it is possible to be 100% confident that you are safe and clean, and be mistaken. But in a certain scenario, I would be willing to lie personally.
I think you meant negative there.
Also, it would seem that hiv is honestly less bad than dying of having no match for acute leukemia, but I'm not doctor can't say for sure.
If my assumption is correct, then would you rather take a possibly HIV-infected donation now, that, if it turns out to be clean, gives you x% chance of living, or wait and see if a little more time brings you a donation that is definitely clean, even if the waiting gives you y% chance of living (where y is lower than x). Without knowing what x and y are, and without knowing the probability that the possibly-infected donation is infected, and without knowing how long you might have to wait to get a definitely clean donation... how do you make the call.
The blood bank was also annoyed but there's nothing they can do. I'd write my representative, but as a non-citizen I don't have one.
But seriously what's the motivation behind this?
Not sure I understand the logic... Quarantine for a set period I can understand, but banning for life makes little sense. After all there are many blood donors in all European countries and we don't all end up with mad cow disease when we receive blood transplants.
For comparison: After having lived in the US you are banned from giving blood in Denmark for 1 _month_
BSE is caused by misfolded proteins called prions[1] which also causes Creutzfeldt–Jakob disease[2] (CJD) in humans. One form of CJD is Kuru[3] which inflicts the Fore tribe of Papua New Guinea and is likely transmitted through cannibalism interestingly enough.
There isn't a great depth of understanding of these diseases yet but in the case of Kuru the asymptomatic period has been demonstrated to be somewhere in between several years and several decades[4].
There are no screening tests for prion diseases[5] so the only way to be sure is to not take blood from risk groups.
[1] http://en.wikipedia.org/wiki/Prion
[2] http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...
[3] http://en.wikipedia.org/wiki/Kuru_(disease)
[4] http://en.wikipedia.org/wiki/Kuru_(disease)#Presentation
[5] http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...
Because Europeans have an increased risk* of having the prion disease BSE they aren't ever allowed to donate. The reasons for this are a similar prion disease in New Guinea has been shown to have a very long asymptomatic period measured in decades. And since there is no screening for prions and no one is sure how long prion diseases remain asymptomatic all Europeans are not allowed to give blood/marrow/organs.
* How much so is of course debatable.
I've lived in Australia for 14 years and I'm still not allowed to give blood here. I doubt I ever will.
But it never occurred to me that organ donation is affected in the same way.
EDIT: Be sure to read http://en.wikipedia.org/wiki/Creutzfeldt-Jakob_Disease#Epide...
I'm a Level II Volunteer for the National Marrow Donor Program, meaning I've had the training to coordinate and run drives locally. Let me preface my comment by saying I'm in no shape or form someone who is qualified to speak for the organization as a whole, as I've only become a volunteer in the last year. These thoughts are my own.
In my limited experience being a part of marrow drives I've come across many people, both volunteers and potential registrants alike, who feel similar sentiments to those that you have expressed -- myself included. There's a lot about becoming a donor that I really wish was better. The policy to not accept homosexuals as donors is created by some FDA(?) policy, so while I also "get it" at face value I wish the reasoning was better substantiated than a blanket ban on a specific group of people. Unfortunately as volunteers we operate on the hope that those that set these medical guidelines have more expertise/experience/knowledge than we do, so we have little choice but to follow them as dictated.
There are other shortcomings. As others in this thread have expressed, the registration form is crazy long. There are reasons for that too -- an inability to contact matches on the registry results in over a 50% false-matching rate in some ethnic groups -- but still, it's not ideal. The form is also very personal, and while the NMDP takes confidentiality very seriously perhaps they don't emphasize that enough. Trying to glean bone marrow information off of existing websites can be a very kludgey process, as several of the websites can be difficult to read/navigate. And there's a bias in the registration process for ethnic minorities, simply because they are so underrepresented that there's funding in place to cover their $100 marrow processing fees. White Americans don't have as much funding. 75% of the registry is made up of White Americans, and when we register White Americans we must ask for financial donations to help displace some of those registration costs. As a Korean-American, minority volunteer, it bothers me that whenever a white person comes to the table I must ask for a donation but I don't necessarily need to do so for minorities. It's not because I want to be racially discriminatory. It's solely because of a lack of funds.
At the end of the day, despite the parts that I wish were different, I still do my best to recruit donors. I know that the time taken to register every new individual to the registry is really a chance at life for someone who is dying. Being a cancer survivor myself I don't think I'll ever be able to forget the feelings of sheer despair and uncertainty surrounding my health, so I know that to come to the aid of someone in that situation, with no other options, is really an incredible, life-changing opportunity.
I really commend you for your honesty, and I don't sense bitterness at bone marrow donation in your comment but sadness at the circumstances. I hope you know that you are not alone in that. Here's to hoping one day bone marrow registration gets easier/more accurate/more efficient, and more accepting.
The language on marrow.org is unclear on this point, so I emailed them. The person who replied clarified that while their guidelines are "based" on the FDA's blood donation guidelines, their own Donor and Patient Safety Committee [1] ultimately determines policy.
[1]: http://marrow.org/About/Who_We_Are/NMDP_Leaders/NMDP_Committ...
Beyond being somewhat homophobic, this policy is actually counterproductive. The explanation is long, but I've written it all up here: http://bit.ly/q6624N . (The second and last points, in bold, are the most relevant).
Being Indian myself, it's incredibly painful to see posts like this and know that I can't do anything to help Amit out. Because I was never allowed to take the test, we'll never know if I would have matched Amit. But just think - what if I had?
I don't mean to insinuate that it's a light decision to make (I recently joined the marrow registry, even though I won't be a match to Amit due to my ethnicity), but if the data already exists, why not reduce the friction to being a donor?
Then when he dies we have somebody to point to and say "this person could have been saved, but for your bigotry".
But often people don't react until you can point to somebody and say "because of direct consequences of this policy, this person is no longer alive". It is even better if you can show his family crying.
Personally I would prefer getting them to fix it without getting anybody killed.
But that may be too much to ask.
FWIW surely the measure is whether you're in a risk group for transmission of disease, like being European (wrt CJD).
Also it would be "since I have homosexual sex". It's not your proclivity that's being challenged it's actions which are known to put one at greater risk of carrying certain pathogens that are detrimental to a donee.
Of course it could go down differently to how you say: He lies, the person gets a temporary reprieve and then dies from some other pathogen that the donor wasn't aware that they have but that the medics were trying to account for by ruling out those having homosexual sex.
Remember it wasn't that long ago that hundreds (thousands?) of people got AIDS from donated blood and plasma.
It's all a trade off. You trade access to the bone marrow of a certain population for an overall lower risk of disease transmission.
It's no different than the fact that if you've traveled to a malaria zone in the past year that you can't donate blood.
It sounds like nothing but Alan Turing-style discrimination based on fairy tales to me (but I might miss a point. like that research that proved that being gay is genetic and the same gene also causes sloppy bone marrow)
The policy is ignorant and based upon the idea that all men who have sex with other men are unsafe, promiscuous, and an hiv test won't be effective as they may have had a recent exposure that is essentially untestable. Its a holdover from the 80's when people were afraid of catching the 'gay disease'.
In my view, unless there is some test for being gay (there isn't) then just go ahead and register. If you're a match, then make sure you're hiv negative and haven't had any risky behavior in the past few months and you should be good to go.
I googled around for some stats, and I found this quote from a website called the Bay Area Reporter:
"According to a 2008 CDC study, one in five MSM in 21 major U.S. cities were infected with HIV, and nearly half (44 percent) were unaware of their infection. The study also found that 28 percent of black MSM were HIV-infected, compared to 18 percent of Hispanic/Latino MSM and 16 percent of white MSM. Of the HIV-infected black MSM, 59 percent were unaware of their infection."
I won't copy-paste it, but if anyone's interested, it's here: http://bit.ly/q6624N
edit:
"The CDC had already revealed last year that approximately 53% of the estimated 56,300 new HIV cases in 2006 were in homosexual men, with the African American population being particularly affected."
http://www.lifesitenews.com/news/archive/ldn/2009/aug/090826...
This is (in part) explained in the box to the right. Then there is also the 'population statistics' differences.
Epidemiology is a strange field. Because of the difficulty of balancing specificity and sensitivity, "99.9% accurate" tests often end up meaning that even if you test positive, you have a small chance of actually being infected.
Statistics are scary, especially to policy makers. If you tell someone "homosexuals have up to a 5000% higher chance of getting AIDS from sex", that can have a pretty big effect on policy.
EDIT: I do know the fancy medical terms, but I don't pretend to really understand what they mean. You need a real serious medical education to understand this stuff.
That's a description of most cancer treatments, especially the traditional ones.
Cancer cells are so similar to normal healthy tissue, they're difficult to target with high specificity. Most treatments (especially chemo and radiation) work by killing cancer cells marginally better than they kill (most) normal cells. The targeting is getting better for both classes of treatment, but the collateral damage is still significant.
Killing all bone marrow cells indiscriminately sidesteps the targeting issue, with the trade-off that you effectively remove an entire vital organ. This is just as drastic, but in this particular case happens to be a surmountable obstacle.
I didn't want to "pimp" the foundation here on HN (I served on the board for the first two years), but you can read more about it here:
Then there's the swab kit sign up form. Oh my, what a pain. And then the guilt sets in where I begin to think 'Why am I ignoring the thousands of other people that likely need bone marrow too?'
I can't be alone in this thinking. But what can I do next? I certainly can't sit idle and watch this guy die.
Sure, my registration in the database will help to match me against other people in need, but it doesn't inform me of people who are in need that I don't match.
See, that's what I mean. I feel guilty that I can't tell others about the thousands of people who are also in need. And really, even if I knew who all these other people were, my friends and family would get terribly annoyed that I would be telling them all about hundreds or thousands of other people in need.
See the problem? We care about Amit because he's high profile (and I'm glad we are trying!), but we do very little for the more 'anonymous' types. That's where my guilt comes in.
So many people have told me throughout my life that I need to just ignore it, and you can't save the world. I can't help but think that's just their way of trying to invalidate any guilt of their own, even if they're right that it's not possible to help everyone everywhere.
Though that's why I invest on Kiva, because I can help make an impact in a "starving" part of the world helping to build up economies so the people can take care of themselves, rather than solely relying on financial donations.
Feeling guilty isn't solving the problem, however. Guilt is just a pre-cursor to either resolve or apathy. If you don't do anything about it, you either get into a loop of guilt-> apathy-> guilt or you choose to ignore the problem (as you say your friends do).
Any action you take towards true progress for those in need, no matter how small, is good.
"The journey of 1,000 miles begins with a single step"
My original intention for discussing my guilt was that I know it's a common feeling, and I wonder why so many people take action/interest for high profile cases. It's likely the overwhelming sense of apathy towards "saving the world" that people zoom in on particular people that they're familiar with.
But I still can't help feeling guilty for trying to help someone I know, versus a very needy person I don't. I'm not sure I'll ever be able to not feel this way. Ignoring the emotion only seems to bury it, only for it to resurface in the future (similar to your guilt->apathy->guilt cycle). One thing is sure though, even after I help someone, I still feel the sense of guilt and frustration that pairs knowing the rest of the world is still in need.
Like you said, any progress, no matter how small, is good!
So no, you don't have any ethical obligation what so ever toward somebody else. Even if eating out of your garbage could save their life you would be well within your rights to decline.
But really once you stop feeling like it is your responsibility to do something for anybody, no matter how great their need or how trivial it is for you, you feel so much better -- and you can still help somebody if you want to. You just have no obligation.
Though that's why I invest on Kiva, ...
Do you feel like you're not making enough of a difference? You're already helping more people than most people out there.
Alternately if you 'can't tell others about the thousands of people who are also in need' then yes you are guilty and should probably figure out something else useful for humanity that your conscience/selfulness lets you do.
I do not know the names, locations, or other pieces of information about the thousands of other people who are also in need. We know Amit. Without knowing their names and locations, there is absolutely no way to bring the same class of attention to them. There is no way to build a website highlighting one of the thousands of other people, nor is there a way to make it personable and striking to others to get involved.
Amit is lucky because he has a community of people who are making excellent efforts to find him a match. That's fantastic!
The guilt comes in when I know that it's just not possible (or sustainable) to do the same thing for all of the other people in his shoes.
I am a little sad that my message was misinterpreted and it sounded like I was full of "selfulness" --- but I'm hoping it was just a miscommunication.
I could ask them once, twice, maybe even ten times over the course of a year. But beyond that, it begins to mirror harassment. It's just not sustainable for one person to broadcast that many repetitive messages.
Though, I sure wish I could make the same efforts to tell people about each individual of the thousand other people in need, as I have about Amit.
It's unfortunately, just not realistic :|
Just register. You may save a life. Or maybe Kharma will save yours. Who knows.
Tons of YouTube videos are inspirational - like http://www.youtube.com/watch?v=Y2Mu2Na4ajs
To help folks suffering from leukemia in general, join your local bone marrow registry. Transplants can vastly improve the patient's chances of survival, and the typization process you need to go through to join is painless and harmless. But, more importantly: if they find you a match, do not back down. I've heard of cases where the potential donors got scared and gave up upon receiving the phone call.
There are two types of transplants used in treatments: stem cell and bone marrow transplants.
Stem cell transplants are relatively painless -- it's not entirely unlike dialysis for one's blood. Bone marrow transplants are far less trivial, requiring general anesthesia and a couple of days in the hospital. They are are, from what I could gather, far less common and more dangerous.
Also: when / if you join, try to talk all your friends into joining as well. :)
http://www.good.is/post/amit-gupta-and-the-south-asian-bone-...
I joined the bone marrow database and encourage everyone I know to do the same. The donor card comes with me everywhere I go. Whenever I hear about someone like Mr. Gupta, I try and think of every person possible that might not know one of two very important things:
1. Becoming a donor is not as painful as you grew up beleiving it was. 2. A single day of your discomfort could give someone the rest of their life.
Over the course of the next several years, Rich pretty much kept his immediate condition to himself except with his family and few very close friends. This did prove difficult for him since he was someone who was "notable" (a term those of us on HN would understand), but upon publication he would always see the silver lining since it helped promote his foundation.
On September eighth, 2010, Rich was only 36 years old when he passed away after suffering a stroke secondary to leukemia.
Please, do what you can. Every day, do what you can.
"When the processing of your kit is complete, you will officially be listed on the Be The Match Registry. This process usually takes about two months, but the time can vary depending on the number of new members joining the registry each month."
so there is definitely some lag time involved.
You would be unlikely to, but it's not impossible. The human leukocyte antigen (HLA) tissue type Amit needs is just much, much more predominant among fellow South Asians.
You probably can't help Amit directly, but you can help someone else in a similar situation.
The issue: I had temporary hair loss in high school, due to an autoimmune disease according to a dermatologist. I was never tested for it, and figured I could still get tested, but the signup process just stopped me.
I'm in the LA area and willing to drive somewhere to get tested for a match tonight if someone can shed more light on if/how I can do it.
In Indian society, marriage is often within tightly knit communities. What if we track-down people who share second names with Amit's Father and Mother (maiden second name). Would then, the probably of finding a match in such people increase?
Thoughts?
In India Guptas marry other Guptas (or Sharmas or Vermas or other surnames, BUT there is marriage within the community).
This is not true for Smiths in any part of the world.
Sure it is. See, for example, Eleanor Roosevelt.
I know they are trying to save lives but eliminating potential matches and discrimination is not the way to do that.
Our biggest concern with these policies is not that we get left out, but that others who might need our help are unable to get it. Your boycott only serves to worsen the situation, sadly.
For vocal support, thankyou, please do continue expressing your opinion (though bare in mind that this kind of discrimination is at least based in logic, allbeit sometimes incorrect logic, and in protecting people, not discrimination for the sake of itself).
http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transpl...
I've never heard it used here in Australia. We don't have a term for that area. I had to look it up (http://en.wikipedia.org/wiki/South_Asia).
(I've emailed them this feedback).
I did this a couple of weeks ago. Just do it and be done with.
...but I see no way to actually do that. Does anyone else? Where are the kits?
The spine is not invaded, the "marrow" means technically stem cells extracted from blood, in most cases.
http://en.wikipedia.org/wiki/Marrow_Transplantation#Risks_to...
I'm not a doctor.
They said it will take two weeks for me to get the kit, but it was surprisingly fast.
Either way, I am glad to help! - a south asian
"On average, one in every 540 members of Be The Match Registry in the United States will go on to donate marrow to a patient."
http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...
I can say from personal experience that I've been a registered donor for 8 years, and only just yesterday did I receive an e-mail saying that I may be a possible match for a patient. The process going forward is fairly long with tests along the way to be certain (http://marrow.org/Registry_Members/Donation/Steps_of_Donatio...). I was told it could be up to 2 months before doctors decide if I move on to the next stage of donation. If the doctors decide I'm the best match, it could be another 6 months before the actual donation.
>Your password needs to be between 8 and 15 characters long, must contain at least 1 number and 1 letter and cannot contain spaces.
Seriously WTF....I am sure half of the people who wanted to sign up did not just for this bs!
Okay chill...password abcd......
> In the past 5 years have you taken money or drugs in exchange for sex?.. (Men only) In the past 5 years have you had sex, even once with another male?
Half of the people who passed stage 1 probably said "fuck it" at this stage.I am close but am willing to go through this for amit.
> SSN? Driver License Number ? HomePhone ? Current Mailing Address? Permanent Address ? Employer Information ?
Should I also give you my bank account username/passwords?At this point I am really mad!..Luckily the SSN and DL fields are not mandatory
> First Contact Information ? Spouse Information ? Second Contact Information
Grrr....what the fuck!
> Race Information? Not Hispanic or Latino ? Black ? Asian ?
Wtf...take my DNA and figure it out!
After a cpl other irritating forms I am finally able to get a kit sent to my address.
-My advice to Amit's friends would be to please do something to improve the signup workflow.
-Also I have my genome phenotyped with 23andMe.I am totally willing to share it with Amit's Friends or Amit.I am sure a lot of other south asians on 23andMe would be willing too but there is no way to do this!
- You may be a match for someone ten years down the line. Odds are that you won't be in exactly the same place with the exact same contact information.
- It costs about $100 to do the analysis on each test. Therefore, if you provide additional information that may in some ways be redundant, it will aid in screening for likely matches.
People are showing up to help and are then subjected to what seems like an interrogation. Even the most helpful soul would raise her eyebrows a few times.
I'm not saying that the information is irrelevant, but each question is there for a reason, why not just state what it is? You were able to do it in a couple of lines, why can't they do the same in the form.
"Disclaimer: Some of the secondary questions in this form might seem intrusive, but we need to make sure that if you're a match we have multiple ways of finding you.
Also, the analysis is lengthy and costly, we use the additional information to filter out samples that are more likely to match our current needs, which helps to speed up this process.
We are aware of the sensitivity of the information you're providing to us and we take your privacy and your confidence to heart. For the same reasons the password you're setting to access your file should be more stringent"
Before taking the test: "Ah! I probably won't even be a match. Why bother?" After being matched: "Shit! Is this for real? A life now depends on ME?"
There's a similar phenomenon when a competitor starts winning and the possibility of him actually becoming champion materializes. Believers come out of the woodwork.
That's why the goal isn't to convince them to give bone marrow, but rather to just see if they match first.
Also, we don't live in a world where DNA sequencing is free. Seems like common sense to fill out your race.
None of which helps if you would have been a match but instead dropped out of their signup process.
Anything that makes more successful donations less likely is bad. Asking for invasive personal information without justifying it in such a way that people are comfortable giving it is BAD.
The fact the guy you're responding to points out something on a site with enough gravitas that is an impediment to the process isn't douchey, it's being helpful. He may be literally saving lives by getting people to improve the process to get more matches.
I'm sure getting everyone to walk to a hospital and pay their own way to take a sample would be a much more convenient way for the marrow matching service to work, however, I be far fewer people would do it.
Same principle with forms that ask for scary data. Not doing so, and doing things in user friendly ways may get one or two more people the marrow they desperately need.
Also, every time I buy something at a store, I have to give them my addresses. Including my phone number and a few extra ways to contact me in case I move, and you know, someone is dying and needs my help, sounds pretty reasonable.
I hope you're kidding...
Every store I've been to has been perfectly happy with only a green piece of paper with the number "20" written all over it.
At which point you can simply say "no, I don't want to" and they'll still settle for your money.
That's a very, very different question from "... have you had sex, even once, with another male?" which I think is what they meant to ask.
If I was going through this process, I'd answer yes even if not true purely out of spite.
Of course, as a white male I'm about as boring ethnically as they come, so I realize my potential for making an impact is quite low.
Of course your particular wording is just opening a huge can of worms with "what does 'people you only know casually' mean?".
In the U.S., if you donate blood you are always asked this question, so this is completely acceptable. Do you really want the donation pool potentially contaminated by the HIV virus?
This is FUD. Gender of partner as an HIV risk factor is now much less predictive than a number of other risk factors that they do not check for; it is especially insulting to monogamous couples whose HIV risk is negligible. (The Red Cross is especially odious in this regard, as they are still asking this question not as "in the past 5 years", but iirc "since 1978", which is absurd.)
http://en.wikipedia.org/wiki/MSM_blood_donor_controversy#Uni...
Reducing the time limit and/or adding other factors to the screening would remove the objections of (most of) the people that complain about this rule.
And regarding the 1978 date, we still don't even know how long HIV can lay dormant in humans.
[1]http://www.cdc.gov/nchhstp/newsroom/docs/fastfacts-msm-final...
49% of HIV cases = 580,000 cases. That's a staggeringly high infection rate in the MSM community in the United States - more than one in ten. The CDC estimates that one in five gay men have HIV in a study of 21 major cities, and that 40% of them don't know it.
There is a long way between "up to one in five MSMs are HIV-positive" to dismissing discussion on whether all MSMs should be banned from donations for life with "Do you really want the donation pool potentially contaminated by the HIV virus?"
Once you're signed up online, though, the registry is pretty painless. The cheek swabs were a lot more convenient than 23andme's massively annoying spit donation.
In the 23andMe there is a "Relative Finder" options. https://www.23andme.com/ancestry/relfinder/
probably they can create a "Donor finder" options easily ..
For further reading, look into social norms vs. market norms, especially the example of the Israeli day care: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=180117 (paywall)
Of course, asking your medical costs, recuperating costs, etc. to be covered is totally reasonable.
a)I am interested in $100,000 if I match.
b) Not in it for money but please donate $100,000 on my behalf to a charity <optional Textfield>
c)I am not in this for money. If I match, I am optimistic about your recovery so please keep the $100,000 to enjoy post recovery.
> It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.
> [...]
> The term ''human organ'' means the human (including fetal) kidney, liver, heart, lung, pancreas, bone marrow, cornea, eye, bone, and skin or any subpart thereof and any other human organ (or any subpart thereof, including that derived from a fetus) specified by the Secretary of Health and Human Services by regulation.
"He now promises the money to the first person who matches Gupta, regardless of whether that person goes through with the transplant: no quid pro quo."
In a separate case, there is an ongoing lawsuit attempting to overturn the ban on offering payment for marrow donation.
http://www.bloomberg.com/news/2011-10-11/web-bone-marrow-bou...
Allowing for cash incentives would serve to reduce the quantity of unfulfilled demand from which black markets -- and the criminal organizations which supply them -- emerge.
At the very least, such incentives would mean far more people listed in donor registries, the dearth of which is the very problem Amit is running into.
http://reason.com/archives/2011/11/11/the-case-for-legal-org...
If he could, why hasn't he then? In the link you pasted, why did so many people die awaiting transplants if was able to be obtained illegally right now? Surely they didn't want to die.
I'm not sure I want to live in a world where the economically oppressed are pressured financially to give up body parts to the wealthy in order to survive. Just my 2 cents.
I would suspect that he has some moral compunction against kidnapping people and killing them for their body parts.
Regardless, you now seem to be implying the opposite claim from earlier. Is it that no longer prohibiting voluntary sales of organs (e.g., bone marrow) would result in an increase in such abductions/killings, or is it that such killings don't seem to happen despite the prohibition?
>I'm not sure I want to live in a world where the economically oppressed are pressured financially to give up body parts to the wealthy in order to survive.
Would it be morally preferable to only allow people who aren't "economically oppressed" to sell their bone marrow?
Your reply to him would help me see your side better, I think.
I'm sure they happen, because there is a black market. But I think they would happen a great deal more when the market is bigger and more legitimate (legitimate from the POV of the purchaser).
> Would it be morally preferable to only allow people who aren't "economically oppressed" to sell their bone marrow?
It's more morally preferable if only those who sold their organs didn't need the money (ie, they are doing it from the goodness of their hearts, not because they were screwed by some societal systems and are down on their luck), but less morally preferable if you actually had to enforce it (which would require selectively enforcing a law based on your perception of someone's intentions).
As I think about it more though, I'm leaning more towards: Let them sell their body parts, it's their body, their choice. Even if it leads to more crime, prosecute the crime, but let people have their personal freedom.
Not that it matters anyways, science will sort this out one day. Ideally we'll be growing our replacements organs in a lab, from our own cells.