Coming soon: Automatic registration for organ donation in the Netherlands
Two weeks ago, Dutch politicians started debating a proposal from Fall 2017 by the D66: how should the public register for organ donation (orgaandonatiewet)?
Today, the vote is in: 38 – 36. The current opt-in system is going to change, and now folks will need to opt-out in order to de-register from organ donation by default. Unsurpsrisingly, the vote today divided individual parties in their votes for and against the law.
So what does it mean to “opt-in” or “opt-out”?
What is the system for organ donation in the Netherlands now? Opt-in
The default is that people are not registered as organ donors. Then, they can choose to be added to the registry. Currently, 3.5 million people in the Netherlands are registered organ donors (that’s roughly 1 in 5 inhabitants).
This is the current system in the Netherlands. If you’re ready and willing to be an organ donor — and really just can’t wait for the orgaandonatiewet to start to automatically enroll you — you can register now by logging on to your DigiD and sign up here. If you know enough Dutch or have a Dutch-speaking friend to translate, it’s easy. If you have none of the above, then go here to watch this 2-minute video while you are filling out the online form. You can register if you are at least 12-years-old and registered in the Netherlands. (This means expats are included!)
Issues with the current system
Believe it or not, this process is actually sort of prohibitive. If you’ve been wanting to be an organ donor, did you just open a website, log in to your DigiD and flip through the four webpages needed to register? No?
Although going to a website doesn’t seem like much effort, it’s like the “out of sight, out of mind” phenomenon. Nowhere in any of my registration or license exchange procedures in the Netherlands did anyone ever ask me whether I wanted to be an organ donor. I saw the pamphlet at my local gemeente office, but since I didn’t know enough Dutch then, I didn’t initially sign up. (Full disclosure: I just registered while writing this piece.)
For comparison, it was far easier to sign up as an organ donor in the US. When I obtained my first driver’s license when I was 16, I checked “Yes” on my paper application. A sticker was placed on my license (the sticker subsequently was replaced with a printed icon directly on the card). Then, whenever I renew my license, the renewal application confirms if I still wanted to be an organ donor.
Both systems are passive, opt-in approaches, requiring the potential donor to seek out registration. Whether that be with assistance (as in the US) or not (as in the Netherlands, for now).
What is the future of organ donation registration in the Netherlands? Opt-out
The default is that people are registered as organ donors. Then, they can choose to be removed from the registry. This is what was just decided. Today.
The concepts of opt-in and opt-out programs in health care are most commonly known with respect to HIV testing. This is in areas where it is common enough to warrant it. The intent is that the benefits to the individual and population of such opt-out testing outweigh the drawbacks.
On the issue of organ donation, naturally, the principles differ. The nature and ethics of the health issue is different. HIV is a communicable disease and having HIV still carries stigma. On the other hand, organ donation involves death and the sacredness of the individual human body. For both, they can be highly political, and for organ donation, anything to try to increase the quantity of limited resources (organs, of course) is the key.
Here are some interesting testimonies from Ireland, which reflect some of the commonest arguments against and comments about a possible opt-out organ donor registry.
Other options
In Australia, the Organ and Tissue Authority didn’t implement an opt-out program, but implemented many other interventions to try to increase the number of organ donors. These included: a public awareness campaign, more training of health professionals to discuss organ donation at the right times with patients and families, arranging paired live organ donation, and paid time off for live tissue donors. All great ideas, and effective according to them. But also probably a lot slower to have the desired effect, for better or worse. This is depending on which side of the opt-in/opt-out debate you are one.
Also, keep in mind that the orgaandonatiewet also indicates that it would apply only to people 18 years and older, so presumably the arrangement for children under 18 won’t change.
For expats 18 years and older, it’s not clear if the new law will include you, so perhaps better to go the old-fashioned way via DigiD to declare one way or another whether you wish to register as a donor or not.
If you still want more information about organ donation in the Netherlands, read the online brochure that goes into detail about which organs donated are used for what purposes or check this site.
In the meantime, until the orgaandonatiewet is in effect, if you want to register, don’t wait. Take the two minutes to do it. Now.