You Gotta Have Heart: A Response to Critics of “Why I’m Not an Organ Donor”

Recently, I made a lot of people angry with my piece, “Why I’m not an Organ Donor,” with comments generally falling into two broad categories: ad hominem attacks and sincere questions about my position. Of the former, biologist/blogger Jerry Coyne’s stand out, both because of his platform and because they were so over the top. I’m not sure why any religion scholar would take JC seriously. He knows nothing theoretical or practical about religion, yet he continues to write about it, masking his lack of knowledge with unprofessional and unproductive ad hominem attacks.

In fact, I preferred the classic “slut” comment to JC’s shallow engagement with my piece. At least that comment made the point that any woman on the internet is vulnerable to sex shaming even when she’s saying that she doesn’t want to share her body with others. There’s no masking there, just a gut reaction, which is at least more honest than JC’s pretense at engagement.

That being said, there were reasonable criticisms of the piece, which I will address. But first, I’d like to very briefly restate my main points.

We have an organ economy, and calling it donation doesn’t change that fact. This economy is only visible by shifting the frame of the story. The story as it is—the microscopic story—is one of an altruistic donor giving up organs to save the lives of others. This is the story that gets the most media attention because it makes people feel good about themselves and it’s a hopeful story: a stranger helps someone, life continues out of death, people aren’t selfish. All you have to do is check a box at the DMV or on Facebook. Never mind the fact that only 3 out of 1000 who choose to do so actually become a donor. Simply having the intention to donate is the new ethical standard.

Having spent a year doing clinical work and about three years doing research in transplant, I have a big picture view of the system, a view that the microscopic story leaves out. The telescopic story includes the processes that lead up to the life-for-a-life exchange in the microscopic story. Telescopically, it’s easier to be a donor than a recipient. Donated organs as free resources are allocated based on medical and social factors. Often these social factors disadvantage those who already have limited access to healthcare. There’s hard data on the role of these social factors in the research and on the OPTN website run by the U.S. Department of Health and Human Services. From my own clinical experience, I have anecdotal data about how significant resources are in getting on the list for an organ transplant (non-kidney). None of this is new to those who work in transplant, and there are many hands taking up the work of ameliorating this situation.

These main points were wrapped in a short personal narrative about not being a donor myself. Just as in the media depictions of organ donation, the personal story shaped the reception and responses to my piece. Had I omitted my own donation status or led with a story about a donor, then the information about the larger system that I presented would have been received more charitably. Many of the emotionally charged negative responses simply make part of my argument for me: the microscopic story has deemed all aspects of organ donation ethical, and any challenge or nuance to that will be met with scorn.

My responses to sincere criticisms:

Why not work to fix the system instead of not being a donor?

Can’t I do both? Can’t I be a conscientious objector and engage in reform at the same time? While it wasn’t part of the original piece, I am working on reforming the system. I have coauthored pieces on increasing the knowledge of what living organ donors can legally be compensated for (travel, some lost wages, etc) and on the ethics of using social media to seek out living donors. I’m currently working on a project that would expand the idea of social support to potentially include institutions, such as churches, that are willing to provide the transportation and daily care that’s required to recover post-transplant. Currently, there’s a preference for traditional family models of social support to qualify to be listed for an organ, but I would like to see if that could be expanded to include other kinds of support. This kind of work is an uphill battle. I don’t anticipate changes any time soon.

But isn’t it the case that not being a donor just makes the organ scarcity worse?

Maybe. But almost all aspects of the economy run on scarcity, either real or imagined. Since I interpret the organ donation system as an economy, I assume that even a lack of real scarcity will lead to the creation of imagined scarcity. Does anyone really think that when we can take 3D printed organs off the shelf that we will hand them out to people who need them? No. There will be a new kind of scarcity created to create demand and high prices. To me, that means that working to change the conversation about who has access to organs now is central to any ethical discussion.

I think the more trenchant criticism, which I’ll make of myself, is one of privilege. My social support, education level, finances, and knowledge of the medical system mean that I could probably get listed for an organ should I need one. Personally, I would not choose that course of treatment if I hadn’t already decided to be a donor, and more than likely, I simply would not choose that treatment. Additionally, once I’ve done the work of describing the organ economy, I feel like I have some choices about how to interact with it. If it’s an economy, then I can choose whether or not to be a customer or a product in it. That’s more privilege than a lot of people have.

Aren’t you just worried about your own moral purity?

No. I worry a lot about moral purity and the role it plays in our society. I think of moral purity as funding black and white thinking about ethics and making sure that you are always on the good side of that divide. I’ve presented organ transplantation and donation as entirely gray. The microscopic and telescopic stories can both be true, even at the same time. The question is which one is most compelling to you as a story that directs ethical action. For me the telescopic story is the most compelling and leads me to the ethical conclusion that I need to work to make the system better, so I do. The microscopic story has never been compelling to me, and in fact, with patients who have received transplants, that story can be a source of psychological trauma. They often feel like they’ve received a gift they can’t repay, that they were unworthy, or that the life-for-life exchange becomes overwhelming for them.

Now I feel horrible about everything. What can I do?

If you want to be an organ donor, you have the autonomy to do so. But there are things you can do that may be more effective in reforming the system.

You’ll probably never actually be a donor despite your intention to do so; as noted above, only 3 out of every 1000 donors die in exactly the right way for their organs to be useful. But you can help transplant patients in other ways. You could be proactive in being the social support for a transplant patient, especially if you know that patient, including going to medical appointments with them—both before they need an organ and after the transplant. Or, you could offer space to a patient post transplant, since patients need to stay near the hospital for a period of time.

If, like me, you’re more systems oriented, then get involved in the conversation. Organ transplantation policies undergo review fairly routinely, and public comments are always requested. Check the OPTN and HRSA websites monthly to see if there are policies up for review. Then read the proposals and leave a comment.

But, if you opt to be a donor and don’t choose to work for a better system I won’t judge you.