Californians Sign Up for Online Organ Donor Registry

By M.L. Baker  |  Posted 04-08-2005

California's new online registry for organ donors has already signed up more people than expected.

As of Friday morning, more than 17,500 people had registered, easily beating the goal of 15,000 hoped for by the end of the week.

After plans for the registry were stymied by state budget shortfalls, the four federally designated organ- and tissue-procurement nonprofits in the state set up another nonprofit organization, Donate Life California, to operate the registry online.

This registry, built by Inetz Media Group, launched Monday.

The California legislature approved plans for a registry in 2001.

"Originally, the state was going to research it and come back with how they were going to do it, but the research alone was over a million dollars, so it got bagged," said Brenda Owen, Public Education Coordinator at Golden State Donor Services, one Donate Life California's founding organizations.

Instead, the legislature gave the organ procurement organizations permission to set up a registry themselves, which they did for a cost of about $40,000, said Owen.

The savings come largely from the Internet. "The most cost-effective way was an online registry where people would type in their own information rather than having someone else keyboard it," said Owen.

Of the nation's 90,000 people waiting for organ donations, more than a fifth are in California; about a third of them will die waiting for transplants, according to information provided by Golden State Donor Services.

Only about half of families losing a loved one consent to donate his or her organs, said Owen.

That rate is expected be much higher if relatives know what the loved one would have wanted.

When people sign up on the registry, they can enter e-mail addresses of friends and family members.

The site will send messages informing them that a loved one has registered and urging them to register themselves.

Registrants can specify which organs and tissues they are willing to donate in the case of their deaths and whether these can be used for research or sent to another country.

Information entered by potential organ donors can only be viewed by transplant coordinators at hospitals, who have read-only access.

Regular hospital staff members are not authorized to view the information, said Owen.

California is the 37th state to form a donor registry; about two-thirds of existing registries have an online component.

Many states use the Department of Motor Vehicles to collect information for the registry; that process seems able sign more people up in shorter amounts of time.

However, Jennifer McGehee, a spokesperson for Donate Life California, said DMV cost estimates just to study a registry were many times what it cost to implement an online registry.

The largest state registry, started in 1992, is in Illinois, with about 3 million registrants.

State registrants can sign up by phone, by Internet, or when receiving or renewing their driver's licenses.

The DMV gives Californians pink dots they can stick on their driver's license to show that they want their organs to be donated after their death.

However, people handling donation cases have only a 10 percent chance of seeing the pink stickers, said Owen.

Patients may not arrive at the hospitals with their driver's licenses, and the stickers can wear off or not be transferred when a license is renewed.

"This [registry] makes sure your pink dot sticks," said Owen.