Kidney App: قربونت
Iranians are more likely to be donors, but not because of t’Arof. Organ donation for compensation is legal in Iran. As such, market forces have prevailed, and the wait for kidneys is not that long. In contrast, in the USA, the average waiting time for a kidney is 3 to 4 years. People go on dialysis and wait for a kidney to become available. During this time, their health deteriorates - the ideal kidney donation scenario is pre-emptive - you get the kidney before ever going on dialysis. In the US, over 80,000 people are on the waitlist for a kidney. 15 people die daily while on this list.
Many people find the situation in Iran more horrifying than the situation in America, as altruism in organ donation is considered morally superior to compensated donation. Altruism is, however, practically inferior if the objective is maximizing public health.
This raises the question: Can a system of compensated organ donation emerge that is ethical and not exploitative? Here we consider the issues and propose a “Qorbun-e jigaret” Kidney App that appeals to both practical (market) and altruistic motivation. The App is an interface that would rest atop a larger system of compassionate, practical, ethical organ donation checks and balances.
In 2009, I met a man whose mission it is to convince people in America to become living kidney donors - to donate their kidneys to friends, family and strangers who need one. Here’s their website: giftoflivingdonation.org
He got involved when his son came down with renal disease and he became a living donor himself.
When I found out what he does for a living, I cheerfully told him that Iranians say “qorbune jigaret” and that it means “I’m the sacrifice for your liver”. You can also just say, “jegaretam” - “I am your liver”. Organ donor dream.
“Ah,” he said. “I wouldn’t think Iran has an organ shortage problem thanks to the difference in culture. Because cultural differences are HUGE. This morning I read that a poll in Canada showed that 45% of their population is STRONGLY opposed to Presumed Consent (i.e. checking the box NOT to donate at death).”
So I coughed and said - um, that’s just an expression. I don’t know if Iranians actually live that line. I don’t even know if I translated it correctly. Let me get back to you. I ran a few questions by the readers at Irandokht, and invite you to add to the conversation here.
- What does “qorbun-e jigaret” mean? Or “jigaret-o beram?” What is behind this t’Arof? The first phrase literally means “(I’m the) sacrifice of your liver”. The second phrase is literally “I go your liver” (or is it “bebaram” - I’ll take your liver? That sounds like a threat). I hope that readers will come up with many levels of meaning.
- Speaking of sacrificing your organs, are there many Iranians in need of organ transplants? I hear there’s a kidney stone epidemic, due possibly to the arid climate and people not hydrating enough. Do Iranian kidney issues go beyond this? [Update - below]
- Is living organ donation culturally approved of in Iran? [Update - below]
- Are Iranians comfortable with living donations (giving an expendable organ like a kidney to someone while you’re alive)? How about after death? Are there religious or cultural barriers? [Update - below]
- If Iranians aren’t currently big on donating organs, should we become so? Could we design a campaign around “qorbuneh jigaret”? Has this already been done? Wouldn’t it be great to be the country that leads the world in altruistic living organ donations? What a great reputation. “Welcome to Iran! We sacrifice ourselves for your liver!”
- Are these phrases simply t’Arof? Are they just empty endearments? Or is there something thrillingly real behind them? Do they commit the speaker to becoming a living organ donor? What would happen if as a nation, we started to truly live out t’Arof? Everyone would have free will and choice (extiAr dArid) - and everyone would have a living organ donor standing by.
Stats: Kolieh vs. Jigar - کلیه و جگر
Perhaps we say “qorbune jigaret” because it’s less likely that we will be called on to deliver. Most people who need organs need kidneys. The statistics in America are sobering.
- There are currently over 80,000 End Stage Renal Disease patients on the national waiting list for a kidney transplant.
- Approximately 70 people are added to the waiting list daily.
- The average wait time is 3-7 years, and projected to only get worse.
- Approximately 15 people die daily while on this waiting list, or one death every 90 minutes.
- Approximately 5 people are removed daily from the list, because they’ve become too ill for a transplant.
- Now, only 12% of kidney transplant candidates get an organ from family or friends.
Iran Organ Donation Information
How do these statistics compare with Iran? I posted a variation of this article on Irandokht last year and got the following response (Just noticed it today):
You should read “Kidneys and Controversies in the Islamic Republic of Iran,” by Dr. Diane Tober. It is a pilot, ethnographic study, where I interviewed kidney sellers, recipients, and transplant hospital staff in Shiraz University, regarding kidney sales and the meaning of transplant organs. Most of the questions you ask are answered there. If you still have questions feel free to contact me at d_fordancer at yahoo dot…
I have yet to download the article ($25 - and I’m busy with fusion. So many cool projects, so little time!) but will do so soon. One thing I notice from the abstract is the emphasis on Shiite Islam and the flexibility of Sharia law. Most people don’t get how flexible it is. I’m looking forward to reading the paper and updating this article.
A personal question
How do you feel about donating your organs? If you are against it, how do you feel about receiving organs? Should you be eligible to receive organs if you don’t agree to donate your organs? Many people are against donating their organs, until they or their family needs one. Then suddenly, they are for it. On the other hand, this past spring there were 2 cases in New York where the families of recipients of organ donations who died (of causes not related to the organ transplant) would not allow the recipient’s organs to be donated to someone else. Apparently, you don’t have a change of heart until you *need* a change of heart. And then, you have a change of heart again.
App for Organ Donation
And now - how about a “qorbuneh Koliet App”? The App would use medical data (your blood type and other considerations) together with GPS data to match you with people in need of organs. If someone in your area is in need of an organ, you would get an alert. You could also check the app to see how many people needed what type of organ at any given time. So, you would punch in your location, and you would see that 10 blocks away is a hospital that needs a kidney with B+ blood. You would realize - hey! I can sacrifice one of my kidneys for this person! I will be a hero! Or you could just watch the lights as they change from “needing kidney” to “going into kidney failure” to “too late! No-one stepped forward.”
Issues to address
The technology and medical data exchange networks that would support such an App exist and are constantly being improved [citation and link required] A few issues around the technology remain, as well as some unresolved social issues.
- Confidentiality. The App would not name names. Patient confidentiality would be assured. Stripped of patient and donor identity, the data from hospitals on organ needs (kidneys, livers, hearts) would be broadcast via this app which would show you the nearest hospital and their organ requirements.
- Presumed consent. This is controversial. In the US, it is presently illegal. If enacted, it would mean that, unless you check a box saying otherwise, the state presumes that you DO want to donate your organs upon death. Right now, they assume you DON’T want to, and have to get permission from family. Families usually say no. They don’t like their loved ones carved up. (Recycle organs! The ultimate recycling).
- Compensation to donors. This is frowned on. They don’t want people to in any way be pressured or exploited to give their organs. It has to be 100% altruistic. That sounds lofty, but it doesn’t seem practical. Advances in medicine make many surgeries simple and routine. Perhaps it’s not such a big deal to allow a marketplace of organs if it’s regulated. For example, if you do this nice thing (become a living donor), I think at the very least, and without exploitation, you should be given comprehensive health insurance for life - a full upgrade. It would be non transferrable, only you benefit. This would be so that no one else could pressure you for their benefit. Living donation should provide an overall health upgrade. Who cares if it’s not a total sacrifice on the donor’s part? It’s still heroic (all surgery carries the risk of death), but with the insurance upgrade, it’s sensible.
Health Care Research Funding Issue
Speaking of compensation, the organ donation problem brings up another issue of great interest to me: research funding, collective action and problem solving. Take kidneys. The underlying problem to be solved is that some individuals have kidney failure and require a new kidney. Solutions to the problem are:
- dialysis (maintaining a person with a failed kidney),
- organ donation,
- organ growth from a petri dish,
In an ideal world (excellent information and coordination), humanity would come up with a way to coordinate collaboration for the best long term solution, while taking care of short term needs. We would measure success by the best overall health for everyone, and the least cost. We would, for example, ensure funding of the “growing organs in a petri dish” idea because that seems to be the best long term solution. And while waiting for that technology to come online, we would have an aggressive organ donation campaign to cover the interim organ needs. In the real world, we’re still waiting for the organ growers to come online, people aren’t donating organs, and those who want research into improving dialysis machines have a hard time getting funding (because it will soon be obsolete and because there isn’t enough money in it). So we have a gap, and a lot of death. The issue I’m most fascinated by here is the incentive structure. It seems that the field is not properly incentivised or set up for best collaboration. Dialysis manufacturers are in competition with organ donor programs, with organ growers. There is a conflict with the need to monetize medical procedures which may be preventing the best solution from emerging. I’m grappling with a similar issue in fusion and energy funding, and it seems that the organ donation situation provides a clear example of the collective action problem. More on this later.
Bonus Benefit of being a Donor
As for me, I have signed the papers and have the sticker on my driver’s license that makes me an organ donor upon my death. The great thing about this is that when I die, my body may end up as a cadaver in some teaching hospital. I will thus have fulfilled my parents life long dream of going to medical school upon my death. : ) I still haven’t made the decision to be a living donor. I’m waiting for that insurance compensation deal (or a bonus tummy tuck or something), and the Donor App (“qorbune koliet app”). It would be cool one afternoon to just randomly walk into a hospital and say to someone, “qorbuneh jiggaret, qorbuneh koliet.” - and mean it.