It’s a notorious phenomenon in Asian Australian and Asian American communities:
We don’t tend to register to donate blood, organs, or stem cells as much as other communities.
Particularly in the case of stem cells (bone marrow), this is a life or death situation.
The likelihood of a non-Asian donor matching with an Asian patient is much lower than that of an Asian donor and an Asian patient.
This is an instance where the grey areas of identity and belonging do not hold: for bone marrow donations, Asians need Asians.
You can find out why HERE (American site, but still relevant to Asian Australians and others).
Why am I writing about this at the moment?
Because I’ve heard from a good buddy of mine, Emily Sun, who was a member of the AASRN and writer/Masters student. One of her short stories featured in the anthology Alice Pung edited, Growing Up Asian in Australia.
She has also been a super-keen commenter on this blog and I have always loved how we ‘met’, and got to know each other, mainly through social media.
Emily is facing her third round of treatment for PMBCL (a rare form of lymphoma), and her best chance at longer-term survival is a stem cell (bone marrow) transplant from a matching donor.
Her gorgeous little boy, Luke (who I was lucky enough to meet when Emily and her family were last in Melbourne), has watched his mother go through intensive rounds of chemo and radiation treatment since he was less than three years old. He has made a book for his mum – Family Dinosaur (animated – on YouTube).
Emily has written about parenting with cancer here.
Emily’s story and the campaign surrounding her make me want to reach out and shake the Asian – particularly Chinese – community about a bit.
As mentioned above, Asians are less likely to register to donate bone marrow or blood.
This cultural resistance to donation means that Emily’s chances of finding a match are challenging.
I couldn’t help myself.
I DID SOME RESEARCH.
Common anecdotal evidence and various academic articles about the psychology of donating (or not) iterate the ‘cultural factors’ – some say it’s religious.
A 2002 study that interviewed (American) high-school students found that Asian Americans in particular:
“expressed conflicts between the concept of organ donation and their religious upbringing. They also expressed concerns about the body remaining whole after death, similar to the views expressed by Asian-Americans adults.” (Spigner et al 2002: 99).
This is consistent with a handful of other studies that note the same tendencies, yet the same study notes that adolescent Indians in India and young Chinese people in Hong Kong were found to be “highly accepting” of organ donation. What accounts for the anti-donation sentiments?
On another note, a 2007 study about the donation patterns in Australian cord-blood banks showed that the percentage of cord-blood banked from Asian donors is on par with the Asian community’s general population percentage: 6% (Samuel et al 2007).
What I would like to see is research on how to develop a higher rate of registration and organ/blood donation from Asian communities – what would encourage more to get involved? Is it a question of education and familiarity with the country’s medical contexts?
Is it really about religion? What decent religion would really say ‘Don’t save any of your fellow human beings! Save yourself!’?
Meanwhile, even though we may not be able to transform our communities’ attitudes instantaneously, we can make the decision to act:
- Get the word out about bone marrow / stem cell donation – visit the Australian Bone Marrow Donor Registry (ABMDR).
- Register yourself as a donor – yes, humanities people can save lives, dammit!
- Support my buddy Emily in her challenge to find a stem cell donor match. Cancer screws up more than your health and emotions; it drains finances and disrupts work. You can Like Em’s Fb page here, and pimp Em’s website.
- Spigner, Clarence, et al (2002). “Organ Donation and Transplantation: Ethnic differences in knowledge and opinions among urban high school students.” Ethnicity and Health 7:2, 87-101.
- Samuel, G. N., et al. (2007) “Ethnicity, equity and public benefit: a critical evaluation of public umbilical cord blood banking in Australia.” Bone Marrow Transplantation (2007) 40, 729–734; doi:10.1038/sj.bmt.1705812; published online 13 August 2007.
Thanks for this fantastic article about Emily and donation – she has so much to live for. I hope people see this and choose to donate.
It’s been excellent working with you and others on this campaign. Fingers crossed that a match comes up. Thanks for dropping by. 🙂
Thanks for blogging about this issue and encouraging conversation about it. (And I do love the fact that you couldn’t help yourself and did some research.)
I honestly don’t know how to increase the rates of registration and organ, blood and stem cell donation from Asian communities, but I do want to sound a note of caution. I always get a bit nervous that drives to encourage organ donation have the potential to descend into blame and stigmatisation WRT those who are reluctant to become donors. It’s something I’ve been thinking about a lot lately – how public health campaigns frequently suggest a failure of will and bear moralising overtones and the promise of enlightenment.
I once was a member of an online transgender community. Someone in that community once posted a message saying that, while they absolutely supported organ donation in principle, they were wary of medical practitioners due to past health experiences and they were scared of their body being subject to ridicule, even after death. This person acknowledged that their fears may not have been very rational and they were wanting to know if anyone else felt the same way. What followed were “How can you not want to donate — it saves lives” type comments. After that episode, I became more conscious of anti-anti-donation sentiment.
That note of caution aside, I very much hope that more Asians will register to donate organs, blood and stem cells. And I definitely support the campaign being mounted by Emily and her supporters. As Emily keeps saying: “I want to live”.
Thanks, Tom, for such a thoughtful comment. The moralising about it is something I’ve become aware of, not least because of the conversations that sprang up at the Richard Dawkins Foundation posting the other day.
Donating is a personal issue, and heavily complicated by people’s philosophies and experiences. I think fears about processes – rational and irrational – should have space for airing.
One of things about the religious aspect of being donation-averse is that I know there’s no point trying to argue against it with ‘evidence’. Religion doesn’t rest on that kind of logic (as I’m sure you are well aware, having researched on this topic for about 2 years now?). But is there a way to re-cast the idea of it – particularly blood donation, which doesn’t require ‘loss’ – to make it more palatable?
Thanks for your reply, Tseen. I was a bit nervous about posting that comment because I didn’t want to cause offence. Yesterday on my Twitter feed there was a tweet encouraging people to become donors: “It’s #DonateLifeWeek! Don’t selfishly hoard your organs; register as a donor! Tell your friends and family now. donatelife.gov.au” It’s that kind of talk that I find problematic.
I’m not actually aware of any specific religious-based objections to donation so I can’t speak at a doctrinal level. There is so much variation among religious traditions. Within any one religion, there are usually different sects and different faith communities, and some are more orthodox and others more moderate. So I think it’s important to make that distinction from the beginning. And, in terms of shifting attitudes, I think a good place to start is to target those more moderate faith-based communities and basically do community development work – collaborate with their community leaders to, as you put it, re-cast the idea of donation in more palatable terms. Those leaders are the ones with the clout in their community (and religion so often seems to be top-down in its organisation) and the knowledge of the inner workings of the community. Importantly in this instance, they also have doctrinal knowledge – they might be able to apply that knowledge to reappraising the issues involved (that recasting thing, again).
PS I just remembered: years ago, there was a campaign in Australia (or at least Victoria) to promote organ donation. I think the slogan went: “Taking your organs with you to heaven? Heaven knows we need them here.” At the time, I never stopped to think that this might be targetting religious-based reluctance towards organ donation, but now I reckon it probably was.