After Years Of Debate, California Unveils Online Organ-Donation Registry - InformationWeek

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After Years Of Debate, California Unveils Online Organ-Donation Registry

Privacy and budgetary worries stalled the site, despite 24 other states having online registries.

It took about six years of legal and budgetary haggling, but California this week finally unveiled an online registry for organ and tissue donations, where people can sign up to be donors and even send E-mails to family stating their intentions.

California joins 36 other states that have donor registries, including about 24 that have online registries, says Tracy Bryan, president of Donate Life California, a nonprofit organization operating the registry for the four federally designated organ- and tissue-procurement organizations in the state.

California worked for several years on legislation that facilitated the creation of the online registry. However, even after the legislation was in place, the state's fiscal woes delayed development of the registry, Bryan says. Some estimated the registry would cost up to $1.5 million, but the final cost came in at only about $50,000, which was funded privately, she says. Once the debate over legal and budgetary issues for the registry had passed, the development time of the actual online project was only nine months, Bryan says.

The new Donate Life California Organ & Tissue Donor Registry, which can be accessed at www.DonateLifeCalifornia.org, allows those who work or live in the state to give their consent via the Web to donate their organs and tissue upon their deaths. Once signed up, registrants have the option of sending E-mail notifications to family and friends about their intent. Electronic signatures allow the registration to be legally binding.

Authorized organ- and tissue-recovery personnel have read-only access to the database to check whether a patient, upon his or her death, had registered as a donor. That spares family members from making those decisions during difficult emotional times, when they may be unsure of their loved ones' wishes, Bryan says. It's estimated that nationwide, consent to donate organs is given in only 50% of cases in which donation would have been possible, in large part because family members often don't know the wishes of kin, she says.

Donate Life California estimates that nationwide about 90,000 patients are awaiting organ transplants, 18,000 of whom are in California. Approximately 17 patients in the United States die each day awaiting organ transplants, while 13 individuals are added to transplant waiting lists daily, the organization says.

When the registry was formally unveiled earlier this week, more than 10,000 Californians had already signed up during several months of beta testing, Bryan says. The next goal of the registry is to have the California Department of Motor Vehicles promote the donor site with Web links. Though the DMV promotes donor cards and provides pink donation "dots" for drivers to stick on their licenses, the state doesn't keep a database of potential donors.

Some states, including Utah, have already integrated their online organ- and tissue-donor registries with their motor vehicle departments' donor data, says Fen Evans, senior project manager at Inetz Media Group, the consulting firm that built the California and Utah registries, as well as registries in Idaho and Oklahoma. "Departments of motor vehicles are really a backbone to these registries," he says, since those state agencies can potentially help collect millions of consents or raise organ- and tissue-donation awareness during license renewals and other transactions.

However, Evans says, since the Sept. 11, 2001, terrorist attacks, data privacy and security concerns have made it more challenging for some states to build donation registries that use data from other government systems.

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