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

InformationWeek is part of the Informa Tech Division of Informa PLC

This site is operated by a business or businesses owned by Informa PLC and all copyright resides with them.Informa PLC's registered office is 5 Howick Place, London SW1P 1WG. Registered in England and Wales. Number 8860726.


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, 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.

We welcome your comments on this topic on our social media channels, or [contact us directly] with questions about the site.
Comment  | 
Print  | 
More Insights
State of the Cloud
State of the Cloud
Cloud has drastically changed how IT organizations consume and deploy services in the digital age. This research report will delve into public, private and hybrid cloud adoption trends, with a special focus on infrastructure as a service and its role in the enterprise. Find out the challenges organizations are experiencing, and the technologies and strategies they are using to manage and mitigate those challenges today.
Get Your Enterprise Ready for 5G
Mary E. Shacklett, Mary E. Shacklett,  1/14/2020
Modern App Dev: An Enterprise Guide
Cathleen Gagne, Managing Editor, InformationWeek,  1/5/2020
9 Ways to Improve IT and Operational Efficiencies in 2020
Cynthia Harvey, Freelance Journalist, InformationWeek,  1/2/2020
Register for InformationWeek Newsletters
Current Issue
The Cloud Gets Ready for the 20's
This IT Trend Report explores how cloud computing is being shaped for the next phase in its maturation. It will help enterprise IT decision makers and business leaders understand some of the key trends reflected emerging cloud concepts and technologies, and in enterprise cloud usage patterns. Get it today!
White Papers
Twitter Feed
Sponsored Live Streaming Video
Everything You've Been Told About Mobility Is Wrong
Attend this video symposium with Sean Wisdom, Global Director of Mobility Solutions, and learn about how you can harness powerful new products to mobilize your business potential.
Sponsored Video
Flash Poll