The results confirmed her findings: Thomas had Rh-null blood.
October 22, 2014 7:11 AM   Subscribe

Rhnull blood was first described in 1961, in an Aboriginal Australian woman. Until then, doctors had assumed that an embryo missing all Rh blood cell antigens would not survive, let alone grow into a normal, thriving adult. By 2010, nearly five decades later, some 43 people with Rhnull blood had been reported worldwide.
posted by Chrysostom (38 comments total) 32 users marked this as a favorite
Wow. This is very cool.
posted by strixus at 7:58 AM on October 22, 2014

It amazes me that "won't pay for blood" extends to "expect people to take a day off work and pay for a taxi or gas to donate their blood that is so rare there are only a half dozen possible donors".
posted by jeather at 8:04 AM on October 22, 2014 [7 favorites]

so.. like Sookie in True Blood?
posted by jrishel at 8:05 AM on October 22, 2014 [2 favorites]

jeather -- but this is in the EU/UK, where there are more sane leave policies than the US ..
posted by k5.user at 8:13 AM on October 22, 2014

Switzerland, actually, though it also has more sane leave policies. But there was a story of a woman who would do it, only she couldn't afford to pay for the taxi: there's a distinction that could be made between covering reasonable travel expenses for people who you phone up and ask to donate and paying for blood outright for everyone.

It's nice that Thomas is able to be generous with this, but not everyone is, and people's circumstances change.
posted by jeather at 8:20 AM on October 22, 2014 [6 favorites]

Last year, she joined him and his family and friends to celebrate his 50th birthday party on a boat on Lake Geneva. “She was very kind,” Thomas says. “She saw the human aspect of being Rhnull – not just a bag of blood.”
That's nice and compassionate, but I was wondering about the woman from whom the whole discovery sprang in the first place. I can't access the original 1950 article, but based on the acknowledgments in the Lancet article ...
We are indebted to the Western Australian Department of Native Welfare for their cooperation in facilitating our studies of aborigines, and particularly to Mr. J. Beharell and Mr. D. Hardwick for their invaluable assistance in helping us to locate and to make contact with Mrs. N. We are also grateful to Mr. Wilfred Douglas, aboriginal language expert of the United Aborigines Mission, who collected the detailed genealogical information for us.

The research grants committee of the University of Western Australia and the Australian National Health and Medical Research Council provided financial assistance to one of us (R. L. K.), which made the collection of specimens of blood from Mrs. N. possible. We are indebted also to the medical superintendent of the King Edward Memorial Hospital for permission to publish these results.
... sigh. It's too early to expect that the woman would have been told what was going on, but was the blood taken with permission? Medical advances built on the back of indigenous people without recognition; sheesh.
posted by barnacles at 8:29 AM on October 22, 2014 [3 favorites]

Medical advances built on the back of indigenous people without recognition; sheesh.

... said immediately after quoting the recognition.
posted by IAmBroom at 8:41 AM on October 22, 2014 [1 favorite]

It notably doesn't contain thanks to Mrs. N herself, though that may have been elsewhere.
posted by tavella at 9:21 AM on October 22, 2014 [8 favorites]

... said immediately after quoting the recognition.
Kind of. They acknowledge that she exists. By contrast, they're "indebted to" the people who found and gave them access to Mrs N, the translator, their funder, and the hospital where they presumably worked. They don't express gratitude to Mrs N anywhere in the paper, or attribute any sort of agency to her. The same is true of her community: 450 of ~2000 "have been tested" (as opposed to e.g. "have donated blood for testing"), but there's no indication of gratitude, or even that they had a choice.

Of course, this is very much the style of the time: research subjects, not participants. However much race played into the language of the write-up, it's not great.
posted by metaBugs at 9:21 AM on October 22, 2014 [7 favorites]

Also, they are happy to exploit his blood, and require him to pay all the expenses, but apparently won't let him store blood for himself in case of emergency, and there's effectively no one who can donate to him - there's only 6 potential donors and the closest is in Ireland, too far to help in an urgent case.

I'm kind of cynical about aspects of the "altruistic" blood market, and have been since the 1990s when I discovered that sometimes those "blood shortage" ads from the Red Cross had more to do with the local chapter wanting to sell blood products than an actual emergency.
posted by tavella at 9:28 AM on October 22, 2014 [5 favorites]

metabugs: What would the thanks be for? "Thanks for having an extremely rare blood type"?
posted by I-baLL at 9:36 AM on October 22, 2014

Ah, I was too impatient. I couldn't find the original 1950 paper, but in 1951 the same authors wrote:
We wish to thank the members of this family for their co-operation. We are particularly grateful to Mrs. B---, who gave numerous samples of blood most willingly and furnished the pedigree shown in Fig. 1.
...and then go on to thank colleagues, funders, etc. Not the same people who wrote about the Aboriginal woman, but the difference in attitude is really striking.

I have read other papers from the 50s and 60s that had a pretty heartless attitude towards their patients, but perhaps I was badly wrong about the prevailing mood?

tavella - for context, which country are you talking about for those Red Cross adverts?

I agree that it's mad that he's expected to pay costs, and that some of his own blood can't be set aside for him. I generally like the altruistic donation model (although I've never studied it in any detail), but it definitely falls down in these edge cases.
posted by metaBugs at 9:37 AM on October 22, 2014 [3 favorites]

The US, metaBugs.
posted by tavella at 9:39 AM on October 22, 2014 [1 favorite]

I'm kind of cynical about aspects of the "altruistic" blood market...

Me as well. But my idea was that if donors can't be compensated for their donations, could they at least take a charitable tax deduction on the value of the finished product?
posted by JoeZydeco at 9:45 AM on October 22, 2014 [1 favorite]

It doesn't specify whether or not Thomas has ever set aside some of his own blood, just that if he does he would need to approve it being given to someone else.
posted by jeather at 9:48 AM on October 22, 2014 [1 favorite]

Oh, maybe I misread that? I understood it as 'he can't set aside some of his blood without approving its use for someone else', but the other interpretation ('they can't give his blood away without his approval') makes more sense.
posted by metaBugs at 9:58 AM on October 22, 2014 [1 favorite]

I have read other papers from the 50s and 60s that had a pretty heartless attitude towards their patients, but perhaps I was badly wrong about the prevailing mood?

The Immortal Life of Henrietta Lacks is all about this very question of biological samples taken from a human, credit, informed consent, business and economic ramifications (who profits if the tissue samples result in a saleable product?), the effect on the family, and so on. Interesting stuff, and no easy answers.

Lacks and the HeLa cells: Wiki, previously on Mefi, previously #2 and previously #3.
posted by flug at 10:05 AM on October 22, 2014 [3 favorites]

No, I'm pretty sure the first reading is right; he can't reserve any for himself, just donate blood and they'll distribute it as they see fit. He just has to hope that they still have some on hand, and since it's extremely valuable, those aren't great odds. It's not even clear whether they'd be required to supply it to him even if they have it.

"But if he ever needs blood himself, he can receive only Rhnull blood. If he donates a unit for himself, he has to permit it to be used by anyone else who might need it."
posted by tavella at 10:07 AM on October 22, 2014

Oh, I didn't even get that reading -- he is obliged to permit it, as opposed to he has to specifically give permission. That's ambiguous, but I think my reading is probably incorrect.
posted by jeather at 10:14 AM on October 22, 2014

So what you're saying is... Thomas was NOT alone?
posted by Mr.Encyclopedia at 10:14 AM on October 22, 2014

I just have to say that that article has some really cool photos of blood bags in it.

...and that's not a sentence I'd have imagined myself typing.
posted by Halloween Jack at 10:43 AM on October 22, 2014 [3 favorites]

...and that's not a sentence I'd have imagined myself typing.

Odd. That's exactly the sort of thing I'd expect Halloween Jack to type.

Thomas probably never imagined he'd be the "face to the bag of blood."

Frozen plasma is good for a year. I think the odds are in Thomas' favor - who is likely to need his type?

Also, I've heard of people with weird blood banking a few pints in the months before a surgery. I think this is generally considered not the best thing to do, but an option for certain situations. (For example, not because you are worried about Ebola blood from filthy immigrants. )
posted by Lesser Shrew at 11:01 AM on October 22, 2014

Null but not nulle.
posted by blue_beetle at 11:03 AM on October 22, 2014

Lesser Shrew: sure, Thomas' plasma could be stored for a year; the difficulty is that it wouldn't spend that year locked away and reserved only for RH-null patients --- I believe that almost anybody on the planet could accept his, while Thomas himself can't accept theirs in return. Negative blood types in general can only accept negative blood product donations; positive blood types can accept positive or negative blood products.

There's a low percentage of the general population who are willing to donate their blood, rare blood type or not; if I recall, only something like 5% of eligible US residents ever donate. The percentage is even lower in some other countries. This need for more available supplies, for both blood and organ donations, is one reason I've always been so in favor of any kind of research into artificial and/or cloned replacements.

I'm merely your average O-pos blood type, and I try to do my share; but part of the problem is people like one of my former coworkers: he and his wife adamantly refused to even think about donating the occasional pint themselves, but they were fond of saying things like that if any member of their family ever needed it and there wasn't there, they'd sue "for billions".
posted by easily confused at 11:07 AM on October 22, 2014 [2 favorites]

Only 37 percent of the U.S. population is eligible to donate blood – less than 10 percent do annually.

I have B+, so I normally do platelets. You can do platelets every week!
posted by Chrysostom at 11:29 AM on October 22, 2014 [2 favorites]

Weird and very cool.

As an aside my aunt has a very rare blood type and they have often sent an ambulance or blood mobile to her house in the middle of the night to get a donation. Seems weird other countries can't do this.
posted by fshgrl at 11:55 AM on October 22, 2014 [5 favorites]

This was a great read.

I donated blood once, but I haven't donated any since then. I passed out and couldn't do much for the rest of that day and the next day. It was a bad enough experience that I haven't been back. I'm somewhat close to the lower bound of weight eligibility, which I think was the cause. I like to think that if I had a rare type I'd suck it up and go donate anyway.
posted by vibratory manner of working at 12:17 PM on October 22, 2014

Yeah, I used to donate regularly but I would pass out and/or puke every time and it just didn't seem terribly worth it given that I am boring old O+.
posted by jeather at 12:27 PM on October 22, 2014 [1 favorite]

I'd donate A LOT more blood if blood centers were open late and not just during work hours.
posted by I-baLL at 12:56 PM on October 22, 2014 [1 favorite]

I didn't know blood could be aligned with a specific Protestant denomination. But it turns out that the Lutheran blood group system is called that because of a misspelling of a patient's name, Luteran.
posted by larrybob at 1:13 PM on October 22, 2014 [3 favorites]

It's absurd that a donor of rare blood is expected to pay their own way. I understand why blood donation isn't compensated for, and I agree with it, but in a situation where a donor is already disrupting their life, paying their taxi or airfare isn't quite the same. It's one of those "letter of the law vs. spirit of the law" things (though it's not really based on law, as far as I know, at least not in the US; it's because hospitals will only transfuse blood products from volunteer donors). The intent is to avoid the possibility of having infected blood products due to someone lying about their medical history or behavior for money. It's unlikely a person with a long history of blood donation would think "well, I did start using heroin since my last donation, but if I keep quiet about it, I get a free taxi ride to the blood bank!" At the very least, the agency needing the blood should send the personnel and equipment out to the donor to collect.

I'd donate A LOT more blood if blood centers were open late and not just during work hours.

It might be worth it to see if there's any other interest in blood donation amongst your coworkers, then contacting your local blood agency and see about setting up a blood drive where you work. I've worked mobile drives at all kinds of odd hours, including the occasional third-shift at a manufacturing plant and some evenings after PTA meetings. But yeah, most central blood bank locations are very much 9-to-5 type facilities.
posted by and miles to go before I sleep at 2:04 PM on October 22, 2014 [1 favorite]

This article caused me to look into blood donation. For double red cell donations, the eligibility guidelines specify that men must be at least 61" tall, while women must be 65". Might anyone know why this is?
posted by houseofdanie at 2:58 PM on October 22, 2014

I try to donate platelets once a month or so at Boston Children's Hospital as sort of a quiet thanks for the amazing care my then 9-month-old (and currently healthy) son received there some 7 years ago - If whole blood donation leaves anyone lightheaded and dizzy, I recommend looking into platelet donation. The process takes a while (usually 20 minutes or so to check in, then about an hour hooked to the machine), but since everything but the platelets gets put back in, you tend to avoid the post-whole blood donation after effects - I usually ride my bike back to work from the hospital.
posted by jalexei at 3:34 PM on October 22, 2014 [1 favorite]

houseofdanie - as far as I know height and weight requirements are based on assumed volume and the scale at which a missing donation bag is safe.

The US Red Cross has a standard weight requirement and a height-weight requirement for 16 to 18 year-old blood donors.
posted by Lesser Shrew at 4:01 PM on October 22, 2014 [3 favorites]

If you can't do blood for some reason like me, register for bone marrow. Just google bone marrow + your area and there's almost always a hospital or foundation that will mail you a kit to do the swab and the whole process to get registered is faster than donating blood. You will have to provide your own cookies.
posted by viggorlijah at 6:09 PM on October 22, 2014 [2 favorites]

But doesn't giving bone marrow require surgery?
posted by I-baLL at 8:11 AM on October 23, 2014 [1 favorite]

Nope, no surgery for bone marrow.

The least invasive (and most common) method is to give you a few injections that encourage your stem cells to replicate and migrate out of the bone marrow into your blood. Then you're hooked up to a machine that takes blood from one arm, filters those stem cells out, and returns the rest of your blood to your other arm. If my mum's experience is typical, you'll spend about a week feeling like you have a mild cold brewing (the injections are a chemical signal usually made by your immune system to put itself on alert), and the worst part of the donation itself is that it's really boring, because it's a few hours of not being able to walk around or use your hands much.

The more invasive (and less common) method still isn't surgery, really: it's a needle into a large bone (typically the pelvis), usually under general anaesthetic. My mum did this as well and, while not her favourite experience ever, she said it wasn't too bad. The extraction site was tender for a few weeks while the bone healed, but otherwise the recovery was much faster and easier than for a surgical procedure.

If worries about surgery are keeping you from joining the bone marrow registry, it's well worth reading about the actual procedures (e.g.), which are almost certainly less troublesome than you think.

Your bone marrow is probably at least as rare as the rh(null) blood; it may never be needed, but if someone does need it you could plausibly be the only person in the world capable of saving them. If you think that donation is something you could bring yourself to do, please consider signing up to your country's registry.
posted by metaBugs at 9:17 AM on October 23, 2014 [4 favorites]

The interesting thing to me is that I *do* get paid when I donate blood. Well, I get "points", but they can be converted into goods or prepaid debit cards.

This is in the US, through
posted by Chrysostom at 11:18 AM on October 23, 2014 [2 favorites]

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