Should people not wishing to donate organs at death be required to opt out?

To follow is an excerpt from the CQ Researcher report "Organ Donations" by Barbara Mantel on April 15, 2011.

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In the United States, no one is presumed to be an organ donor. Instead, adults who want to donate their organs upon death must give express consent, either by registering online, checking a box when obtaining or renewing a driver's license or state ID card or making their wishes known to family members.

In Europe, however, governments presume that all adults are potential organ donors; those not wanting to donate must join a registry to opt out. Still, most countries — Austria is an exception — consult with family members before recovering a deceased person's organs.

Lawmakers in New York, Illinois and Delaware have proposed versions of the European model — called “presumed consent” — with the goals of increasing the supply of donated organs and shrinking waiting lists. But all the bills have died in committee amid the public's concerns that such programs are coercive.

In early January, Colorado state Sen. Lucia Guzman, D-Denver, and her co-sponsors were the latest to propose a presumed-consent measure, only to withdraw it a few weeks later amid strong public opposition. [Footnote *] “There is a lot of misinformation out there, and people are scared and upset,” Guzman said after admitting defeat. “It's just causing too much fear.” [Footnote 11]

“We had a huge public outcry,” says Jennifer Prinz, chief operating officer of Donor Alliance. The reaction included such comments on local media blogs as: “I … have been a potential donor for many years. Once these politicians assume they can start carving me up, it's a different ball game.” [Footnote 12]

After the legislation was introduced, Prinz says, her organization saw an increase in the number of people removing themselves from the organ-donor registry. Given that Colorado has one of the highest donor-registration rates in the country, Prinz believes that “removing one's name from the registry might have been less about a person's willingness to be a donor and more of a protest against perceived government intrusion.”

Donor Alliance opposed Guzman's legislation because it was drafted “in a vacuum,” says Prinz. “We were not consulted until the bill was in final draft form,” she says. Donor Alliance would welcome a national discussion about presumed consent, as long as OPOs, representatives from religious communities, transplant centers, hospitals, transplant candidates and the public participated, Prinz says.

“It is fair to say that the government would have to spend a tremendous amount of money on public education to make sure that this presumed-consent notion was not a complete fiction,” says Mary Ann Baily, a fellow at the Hastings Center, a bioethics research organization in Garrison, N.Y. Baily cites the country's multilingual, multicultural population as a reason she opposes presumed consent in the United States. “We have so many different languages,” making it extremely difficult to ensure that every person who would not want to donate understood how to opt out, she says.

However, Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, favors presumed consent as long as families are consulted at the time of death. “It is possible that it would be difficult, but I'm not sure that is an argument for the status quo,” he says. “I think you would get 20 percent more organs” if a new law were properly advertised and health-care providers were properly trained on how to approach the next of kin, Caplan says.

That's despite a Gallup survey conducted for the federal government in 2005 that suggested 30 percent of respondents would have chosen to opt out if the United States had a presumed-consent law. Of course, the respondents had not been exposed to a vigorous education campaign. [Footnote 13]

As evidence that a presumed-consent plan can work, Caplan and other supporters point to Europe, where most countries use the system and have higher organ-donation rates than countries that don't.

In addition to adopting presumed consent and mounting an extensive education campaign, Spain also has increased the number of hospital transplant coordinators who seek out donors. Moreover, Spain has given hospitals more money to perform transplants and expanded the pool of organ donors to include those suffering cardiac death as well as brain death.

Caplan believes Spain would not have seen an increase in donations without presumed consent as the foundation of the effort. “If you just did these other things, nothing would have happened,” he says.

But Berg of the New York Organ Donor Network says she's not convinced presumed consent would produce more donors. “There are myriad research papers on presumed consent, and I don't think any of them have definitively shown in a scientific way that it is presumed consent that has made the difference,” she says.

While Caplan would like to see a few states try a well-advertised presumed-consent pilot program, Baily and Berg are not ready to give up on the current system. Both would like to see the federal and state governments spend more on improving organ-donor registration and increasing the number of families willing to donate the organs of a deceased loved one. What's more, Baily asks, “why don't we spend more energy and dollars on researching how to bioengineer organs?”

Even if presumed consent were adopted by every state, and every single adult in the United States became a potential organ donor upon death, an organ shortage would still exist. That's because so few people die from the right conditions, in the right place, at the right time to become viable organ donors. Waiting lists might shrink, but they would not disappear.

The Issues

* Should people not wishing to donate organs at death be required to opt out?
* Should organ donors be compensated?
* Should kidneys from the youngest donors go to the youngest patients?

Click here for more information on the CQ Researcher report on "Organ Donations" [subscription required] or purchase the PDF.

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Footnotes

[*] Under the Colorado legislation, applicants for a driver's license or state ID card would have been presented with the following statement: “You are automatically deemed to have consented to being an organ and tissue donor and this designation will appear on your driver's license or identification card. If you do not want to be considered an organ and tissue donor, you must elect to not be included on the organ donor registry by inserting your initials on the line below. _______ At this time, I do not wish to be included on the organ donor registry.”

[11] Lynn Bartels, “Senator plans to kill her organ donor bill,” The Spot blog at The Denver Post, Jan. 21, 2011, http://blogs.denverpost.com/thespot/2011/01/21/senator-plans-to-kill-her-organ-donor-bill/21309.

[12] Ibid.

[13] James F. Childress and Catharyn T. Liverman, eds., “Organ Donation: Opportunities for Action,” Institutes of Medicine, May 2, 2006, p. 215, http://books.nap.edu/openbook.php?record_id=11643&page=205.