From the Peoria Journal Star:
Public can weigh in on organ donation bill
Excerpt:
PEORIA —A public hearing is scheduled for 3 p.m. Tuesday in Springfield to receive comment on state Sen. Dale Risinger’s bill to establish a presumed consent policy for organ donation in Illinois.
Sometimes called the opt-out policy, presumed consent has been adopted by many countries and has significantly reduced shortages and waiting time for donated organs. Rather than requiring people to sign up to be a potential organ donor, everyone is considered a potential donor except those who specifically opt out of the program.
Risinger’s bill proposes a presumed consent policy applies for people 18 and older.
“This is an important first step to getting a law in Illinois that helps us have more organ donors. This is just the first step. To get it right, we need public input. The current bill is not in its final form,” said Risinger, R-Peoria.
Risinger’s stated commitment to soliciting public input seems pretty disingenuous. Outside of a few careful readers of today’s edition of the PJ Star, it’s a pretty good bet that the only people who know about today’s hearing are supporters of the bill. Predictably, the “public input” will reflect overwhelming support for a radical change in organ donation policy, simply because Risinger and his supporters have carefully stage-managed the coming show. Look how well the PJ Star article is managed – no voice of caution or dissent. A few phone calls to various bioethics departments would have yielded some. If you want to know just how radical this change would be, consider that Illinois would be the only state in the country with such a policy.
So why would anyone have a problem with this? I can only speak for myself – a former Illinois resident, but I’ll give a few basic objections.
First, the term “presumed consent” is deceptive – as is the term “opt-out.” In fact, you can’t really talk about “consent” at all with a bill like this, unless you think “imposed consent” makes any kind of sense as a term.
Second, some of us refrain from registering as organ donors because we don’t trust some of the lesser-known, but worrying realities regarding organ donation and attempts to expand the donor pool.
I’ll start off with brain death. Most people assume that since the state they live in considers them a corpse if they’re declared “brain dead,” then the state also imposes some sort of uniform standards regarding how that determination should be made.
That’s a comforting thought, but it’s not the reality. In fact, a 2008 article published in the Journal Neurology found wide disparities in how hospitals made determinations of brain death. It’s not surprising considering how the statutes relating to brain death were written (from the article):
In accordance with the Uniform Determination of Death Act, guidelines for brain death determination are developed at an institutional level, potentially leading to variability of practice.
Notice that the autonomy of individual hospitals is treated with a great deal more deference in the UDDA than Risinger and his colleagues believe Illinois citizens should have over their own organs.
In case you’re wondering, there have been a handful of cases made public in which people declared brain dead “miraculously” recovered. Zack Dunlap’s “miraculous” recovery is the most well-known. Not so miraculous when you know that some institutions aren’t as rigorous as others at making those determinations.
Maybe medical professionals aren’t all that hung up on whether or not the determination of brain death is accurate or not, anyway. Over the past several years adoption of the Donation after Cardiac Death protocol has allowed harvesting of organs from individuals within a short (a very short time) after their heart stops beating, usually through removal of a ventilator. The issues here are too long and complicated to get into, but there are already some pretty troubling stories associated with the protocol that should give any reasonable person pause. For more information on that, I recommend reading this link on Ruben Navarro, this one on Kaylee Wallace, and this article by Dick Sobsey on “Schrödinger’s Ethics.”
Does that mean I would never be an organ donor? No, it doesn’t. What it does mean is that my family knows that if I am declared “brain dead,” they will demand to know exactly how the determination was made and how that stands up to the standards determined by the American Academy of Neurology. If the “gold standard” has been met, they can get the organs.
I am not OK with the donation after cardiac death protocol and my family knows this.
See how much there is to discuss? Wouldn’t it be a great idea if Risinger decided to actually open this bill up to a real debate? Isn’t the public entitled to something better than what looks like a stacked deck masquerading as an open public dialog?
For more info on this bill, please check out the following link:
Bill status for SB3613 (includes link to full text of legislation)
According to the PJ Star article, testimony can be emailed to Sen. Risinger here. He says he wants to hear from the public. –Stephen Drake
Addendum: In my haste, I forgot to thank Nancy Valko for alerting me and others to this bill. I doubt I would have heard about it without her digging out the information and sending it on.