Gift of Hope organization took advantage of students on Quad Day

There’s a sea of thousands of students. They’re meandering the multitude of booths and crisscrossed concrete paths, looking for the next organization worth signing up for (and perhaps receiving the free Frisbee or potted plant pending their signature). Quad Day is an animated bustle, and the people are hustling.

Of the variety of booths present, one booth in particular arguably stands out from the rest: Gift of Hope, the organ- and tissue-donor network in the Illinois area. The turnout for this booth is phenomenal; it’s raking in quite a crowd: Almost 10 people are registering to be an organ donor per minute. By the end of the day, the group would break the world record of registering the most people in a single day — at 2,262.

That means that most people had only a few minutes — and some not even 30 seconds — to complete the entire process of registration.

Michael Schubert, sophomore in Engineering, went up to the booth, aware that he could receive a free T-shirt by signing up. He was asked for a form of identification and his T-shirt size, but that’s all. What he didn’t understand was that he was being registered to be an organ donor within the 30-second transaction.

The history behind organ donor legislation

The gap between the number of people registered as organ or tissue donors and people on a waiting list was becoming more severe in the 1980s. But more than that, the number of policies regulating organ transplants — who could carry out the procedures, what constitutes “death” and who would be the recipients of those transplants — were unclear.

It was because of this that the National Organ Transplant Act was passed in 1984. According to the U.S. Department of Health and Human Services, the law accredited the Organ Procurement and Transplantation Network, run by the secretary of health and human services. A few years later, it was mandated that a third-party, private organization (United Network for Organ Sharing) be under contract with the federal government to operate its administrative tasks.

These instated regulations made those situations that could facilitate an ethical lapse impossible, like the ones we end up seeing on “House” or “E.R.,” where the physician has to decide whether the organ donor is worth keeping alive for the sake of another patient. In fact, the surgeons who perform the transplant surgeries are required to be different from the ones who work with the patient in need.

Still, the public’s negative associations with organ donation and what “rights they may give up” hindered organ- and tissue-donor networks from reaching all eligible donors. Because people didn’t fully understand the process you undergo as an organ donor and the good it does for society, the organ-transplant waiting list was only going to get longer. Today, of the population eligible for organ donation, only 57 percent opt to do so, said Tony Sullivan, spokesman for Gift of Hope.

Educating the public

The misconceptions surrounding organ donation made education to the public about its role in research and saving patients an imperative, and that’s exactly why groups like Gift of Hope distill this kind of information.

“Our primary method of raising awareness is through public education, and one of the best channels to bring that message is through health fairs,” Sullivan said. “If you got out on Quad Day, we had a light-hearted mascot to draw attention to Gift of Hope and what we try to do — getting people to register as organ donors.”

Representatives of the organization were available to anybody interested in talking about donor registration, answering every question asked. But the problem is that not everyone will go out of their way to seek that information. And understanding what you’re signing up for is still necessary for something as weighty as being an organ donor — even if it’s a good thing. It’s much like a physician treating a cancer patient with chemotherapy: That doctor has the duty to inform his patient of all effects of the treatment, even if it’s well-intended.

Ensuring a potential donor gives full consent involves a full understanding of both the risks and benefits. According to the advisory committee on organ transplantation to the Department of Health and Human Services, a person giving consent to being a live donor is required to be willing to donate, fully aware of the risks and benefits possible of himself and of the recipient, among other requirements.

At an event as hectic and chaotic as Quad Day, there is no way to be sure that every registered person is briefed on the benefits and risks.

“We certainly try to establish why we’re there. We speak to them as young adults and give them the information that we can,” Sullivan said. “There’s a lot of activity, and it’s kind of chaotic. … We don’t have a long time for that exchange. We try to tell them our purpose and hope they make a wise decision at that point, but it’s not that they’re locked into it for life if they don’t want to be.”

Registering and getting removed from the registry

When I first started researching venues that can register organ donors, I originally thought it was primarily at two locations: the Department of Motor Vehicles and the Internet. At the DMV, they would ask if you would consent to being in the registry when you renew your license (once every 10 years for most people). And online, you directly consent to being in the registry in the 28 seconds it takes to fill out your driver’s license information, name, address and hit the submit button.

Registration needs to be that easy. Who would go through 10 minutes of checking off and filling out personal data?

But I wondered how easy it could be for someone to be removed from that registry if he or she signed up under pretense.

First things first, nearly everything bureaucracy-related in today’s modern age can be found online, and if it can’t be, it likely doesn’t exist. There is, indeed, a Web page for requesting removal from the donor registry, found via Illinois’s DMV website. But the language of third-party networks don’t make it easy to access. Via Gift of Hope, for example, you will find the only way to remove yourself from the registry is by contacting “the Illinois Secretary of State’s office via phone, the Internet or mail to request removal from the registry.” I signed up in less than 30 seconds, but I spent more than 30 minutes trying to find the link that would remove me from the registry.

If you’ve registered online or in person, you should receive a letter a few weeks later thanking you for your contribution and covering what you can do if you change your mind. But for many, that letter might never get to them.

Matthew Soltys, senior in LAS and AHS, registered when he renewed his license at the DMV but did not remember receiving information about how to remove himself from the registry. He clarified that he had been told about the benefits of being an organ donor but not of the risks.

“Free T-shirt!”

Soltys, a resident adviser, was taking his residents through the booths on Quad Day when a girl approached his group and said, “Hey, they have free T-shirts, and you can sign up for one or get one if you are already a donor.”

Michael Schubert said he would have gone ahead and registered as a donor because it’s a great cause. But the concern is that people coming up to the booth could have done so with no knowledge of what they’re signing up for.

“They could have been more straightforward. … People might not be getting into what they think they are,” Schubert said.

“A lot of organizations are doing what we’re doing, giving an incentive to join. But the opportunity is still there to change the decision,” Sullivan said about Gift of Hope using free T-shirts to attract passers-by. “We have not done anything like this before. We can use that in our experience, and we can do a better job communicating through people, tell people what we’re there for and even include information should you change your mind.”

It’s clear that there is no malicious intent behind the efforts of donor networks to add people to the registry, but the decision carries a weight: It’s what you choose to do with your body. That decision-making process should be paid full respect. An event like Quad Day belittles organ donor registration by making it seem like another University registered student organization trying to recruit hundreds of signatories, especially because these signatories may not know exactly what they are signing up for.

Nora is a senior in LAS. She can be reached at [email protected]