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Good Question: Who Writes The Organ Donation Rules?

MINNEAPOLIS (WCCO) -- A 10-year-old girl with cystic fibrosis is recovering in a Philadelphia hospital Wednesday night after a double lung transplant. Sarah Murnaghan was allowed to receive adult lungs after a federal judge made a rare ruling that she and an 11-year-old boy were eligible.

National policy for organ donations had said adult lungs should go to adults before children. Lawyers for the group that sets that policy say what's in place is based on scientific judgment and is in the best interest of the patients.

That got some wondering: Who sets that policy and how do they do it?  What are the rules for organ donation?

"We have policies in place to provide the greatest good for the greatest number of people and to be, most importantly, as fair as possible," said Dr. Scott Halpern from the University of Pennsylvania.

In 1984, Congress passed a law requiring organ donations be controlled by one private, nonprofit organization under the Department of Health and Human Services.  That group is called UNOS –  the United Network for Organ Sharing.  Half of the UNOS board is made up of transplant doctors. The other half is composed of transplant recipients, donor families as well as medical staff and experts.

The board meets twice a year. It determines and constantly reviews the policies for transplants of the kidney, pancreas, liver, intestine, heart, lung or a combination of two.  Each organ has a different policy.

"The reason there is a specific process for allocation is because there simply are so many more people in need of a transplant than there are organs available, so you need to find a way to distribute the scarce resource in a way that provides the best possible outcomes for the greatest number of people," said Rebecca Ousley with LifeSource, the nonprofit organization that manages organ and tissue donations in Minnesota, the Dakotas and western Wisconsin.

For example, every lung transplant candidate gets a "lung allocation score," which is determined by age, lab results, the severity of a person's illness and their chances for a successful transplant.  When an organ does become available, that score is then combined with blood type and geographic distance to determine who is first, second and third on the list.

"The heart and lung are particularly delicate and have to be transplanted quickly," Ousley said.

In Minnesota, there are 3,070 people waiting for life-saving organs.  About 62 percent of all Minnesotans signify they'd like to donate their organs on their driver's license.  When it comes to actually making that decision, Ousley says about 80 percent of families choose to donate organs, which is higher than the national average.

When asked what might happen if everyone donated, Ousley said, "I don't think we'd ever be able to reduce a wait list, but we'd drastically reduce the number of people who die waiting for an organ transplant."

For more information on how to donate your organs, you can go to the LifeSource donation page. In addition to their driver's license designation, Minnesotans can document their decision to be an organ and tissue donor by registering online here.

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