Department of Health and Human Services 

OFFICE OF 

INSPECTOR GENERAL 

JANET REHNQUIST 

Inspector General 

FEBRUARY 2002 

OEI-01-01-00350 

Organ Donor Registries 

A Useful, but Limited, Tool 
OFFICE OF INSPECTOR GENERAL 

The mission of the Office of Inspector General (OIG), as mandated by Public Law 95-452, is to 

protect the integrity of the Department of Health and Human Services programs as well as the health 

and welfare of beneficiaries served by them. This statutory mission is carried out through a nationwide 

program of audits, investigations, inspections, sanctions, and fraud alerts. The Inspector General 

informs the Secretary of program and management problems and recommends legislative, regulatory, 

and operational approaches to correct them. 

Office of Evaluation and Inspections 

The Office of Evaluation and Inspections (OEI) is one of several components of the Office of Inspector 

General. It conducts short-term management and program evaluations (called inspections) that focus 

on issues of concern to the Department, the Congress, and the public. The inspection reports provide 

findings and recommendations on the efficiency, vulnerability, and effectiveness of departmental 

programs. 

OEI's Boston Regional Office prepared this report under the direction of Mark R Yessian, Ph.D., 

Regional Inspector General, and Joyce M. Greenleaf, M.B.A., Assistant Regional Inspector General. 

Principal OEI staff included: 

Boston Region Headquarters 

Russell W. Hereford, Ph.D., Project Leader Alan Levine, Program Specialist

Norman Han, M.P.A., Program Analyst

Julia Green, B.A., Program Analyst

To obtain copies of this report, please call the Boston Regional Office at 617-565-1050. 

Reports are also available on the World Wide Web at our home page address: 

http://oig.hhs.gov/oei 
EXECUTIVE SUMMARY 

PURPOSE 

To assess the value of donor registries as a strategy for increasing organ donation 

BACKGROUND 

Almost 80,000 Americans are waiting for organ transplants, yet fewer than 23,000 received a 

transplant in the year 2000. About 5,600 people died while awaiting an organ transplant. An 

estimated 12,000 to 15,000 deaths a year could yield suitable donor organs, but fewer than half 

of those deaths resulted in organ donation. 

The Department of Health and Human Services has taken actions to increase donation. These 

steps include grants and technical assistance to organ procurement organizations (OPOs) and 

other transplant entities. Medicare requires hospitals to notify their OPO about all individuals 

whose death is imminent or who die in the hospital, thus ensuring that virtually all potential donors 

are referred for consideration. 

In many States a person who obtains or renews a driver’s license may indicate an intent to be a 

donor. In some—but not all—States, this intent is recorded in a “donor registry,” a central 

repository of information on that intent. When an OPO identifies a potential donor, it can contact 

the registry to determine whether the person indicated a wish to donate. 

Despite these efforts, the gap between the need for organs and their availability continues to 

grow. In April 2001, Secretary Thompson announced an initiative to encourage donation. 

Among other actions, the Secretary asked the Office of Inspector General to examine lessons 

that could be learned from existing donor registries. This report responds to that request. 

We base this report on a survey of all OPOs, review of State legislation, analysis of OPO and 

State web-sites, and interviews with more than 50 knowledgeable individuals from OPOs, State 

agencies, and other organizations. 

FINDINGS 

Organ donor registries are emerging as a useful tool. But the 

contribution that registries can make to increasing the number of 

organ donors is limited. 

Organ procurement organizations and States are turning to donor registries as a 

strategy for increasing organ donation. 

Organ Donor Registries -i- OEI-01-01-00350 
C Fourteen States operate registries; 22 of the nation’s 59 OPOs operate in these States. 

These States contain 39 percent of the nation’s population and 42 percent of donors. 

C OPOs in two additional States operate their own registries. These OPOs operate in States 

with 5 percent of the country’s population and 5 percent of donors. 

C Six other States, with 13 OPOs, have recently passed laws establishing registries. These 

States contain 21 percent of the country’s population and 19 percent of donors. In two of 

these States, however, the registries have not received start-up funding. 

Donor registries have assisted OPOs’ organ procurement activities. 

C Registries have led to increased effectiveness and efficiency in OPO operations. In both our 

survey and in interviews, OPO directors told us the registry improves their ability to identify a 

decedent’s wishes about donation. They also told us the registry information is convincing for 

the decedent’s next-of-kin and for hospital staff. 

C OPOs have used data from the registry to focus public education and outreach about 

donation. OPO staff told us they analyze data on enrollment as a tool to help develop 

educational programs and to monitor the impact of these efforts geographically and on 

specific population groups. 

However, there are limits to the contribution registries can make to increasing the 

number of donors. 

C Registries’ measurable impact on increasing the number of organ donors has been marginal. 

Our analysis of data found that families of registry enrollees give consent for donation at a 

much higher rate than do families of non-enrollees; however, enrollees are a relatively small 

portion of all donors at those OPOs. 

C At present, enrollment in registries is limited. Even though the number of registrants is 

growing, only one-quarter of the adult population has enrolled. 

C While registries can foster interstate sharing of information about potential donors from other 

States, the number of such donors is small. Nationally, fewer than 20 percent of all donors-­

an average of three donors per day--are from out-of-State. 

We identified a number of practices that could enable OPOs to take fuller 

advantage of the opportunities that registries offer. 

Our interviews with knowledgeable individuals, both in the OPO community and elsewhere, 

identified innovations that can help maximize registries’ contributions. 

C Registration. In addition to the usual drivers’ licensing process, some OPOs use prepaid 

mailings, Internet sign-up, and free-standing kiosks. 

C Storage. Some motor vehicle agencies download relevant data to the OPOs, which maintain 

Organ Donor Registries -ii- OEI-01-01-00350 
the registry database. This permits faster access, while protecting other sensitive information 

in the drivers’ license records. 

C Retrieval. Some OPOs’ referral systems conduct automated queries of the registry whenever 

a potential donor is identified. 

C Using information. Some OPOs use the registry indication as primary evidence of consent 

and do not require additional consent from next-of-kin. 

RECOMMENDATIONS 

We conclude from our review that caution should be exercised to avoid over-promising on the 

contributions that donor registries, by themselves, can make to increasing donation. We believe 

that the most appropriate use of Department resources with respect to donor registries is to foster 

ways of enhancing their effectiveness. 

HRSA should establish a mechanism to provide for dissemination of information 

on donor registries. 

A clearinghouse could enhance the effectiveness of donor registries. The clearinghouse could 

support information sharing and provide technical assistance. We would urge that it pay 

particular attention to three areas: 

C Automation to take advantage of technology to overcome technical difficulties, particularly 

those related to retrieval of information; 

C Innovation in identifying and developing new avenues for enrolling people, for example, 

through websites or using the Internet at community events; and 

C Education on effective ways of informing the public about the registry, its benefits, and the 

need for organs. 

To the extent that funding is available, HRSA could support research projects that 

seek to maximize the impact that donor registries can have. 

Two areas merit particular consideration: 

C What more can be done to tap registries’ potential? Even those registries in place for many 

years contain a minority of the State’s population. Are there better ways to educate people 

about donation and joining the registry? What are alternatives to the driver’s licensing 

process for registering people? If people are reluctant to be listed in a large database, what 

can be done to allay those fears? 

C How widespread are concerns about using the registry as primary consent for donation? 

More OPOs are using information from the registry as evidence of consent, rather than 

relying on the family. How informed are people when they join a registry? Do they view 

enrollment as providing consent for donation? What are family expectations and 

understandings? 

Organ Donor Registries -iii- OEI-01-01-00350 
COMMENTS ON THE DRAFT REPORT 

We received comments on the draft report from the Health Services and Research Administration 

(HRSA). HRSA concurs with our report and recommendation. 

The Association of Organ Procurement Organizations also provided comments. The association 

is concerned that we may understate the potential future value of registries, particularly if more 

OPOs begin to view enrollment in a registry as consent for donation. We base our report on the 

experiences of those who have worked with donor registries, and on a review of available 

data about registries. This review leads us to conclude that registries can be a useful tool 

in organ procurement. But we urge caution in assuming that establishing a registry will 

lead directly to a dramatic increase in the number of donors. At the same time, however, 

given the critical need for donors, even a moderate increase in their number can be 

beneficial. We certainly would encourage ongoing evaluation of new registries and other 

initiatives intended to increase donation. 

We present the full text of the written comments in Appendix C. 

Organ Donor Registries -iv- OEI-01-01-00350 
TABLE OF CONTENTS 

EXECUTIVE SUMMARY ...................................................... i

INTRODUCTION ............................................................. 1

FINDINGS

Registries operate in many States ................................................ 5

Registries can provide assistance to OPOs ......................................... 6

Registries’ contributions are limited ............................................... 8

Taking advantage of registries’ potential .......................................... 11

RECOMMENDATIONS ...................................................... 16

COMMENTS ON THE DRAFT REPORT ....................................... 18

APPENDICES 

A: Registry descriptions ...................................................... 19

B: Survey responses ........................................................ 21

C: Comments on the draft report ............................................... 25

D: Endnotes .............................................................. 31

Organ Donor Registries OEI-01-01-00350 
INTRODUCTION 

PURPOSE 

To assess the value of donor registries as a strategy for increasing organ donation. 

BACKGROUND 

Almost 80,000 Americans are waiting for organ transplants, yet fewer than 23,000 received a 

transplant in the year 2000. In that same year, about 5,600 people died while awaiting an organ 

transplant.1 An estimated 12,000 to 15,000 deaths occurring in the United States every year could 

yield suitable donor organs.2 However, only 6,000 of those deaths resulted in organ donation in the 

year 2000. Between 1995 and 2000, the number of patients awaiting a transplant grew by 80 

percent, while the number of donors grew by only 12 percent.3 

The Department’s Role in Organ Donation 

Health Resources and Services Administration (HRSA). HRSA’s Division of Transplantation 

provides Federal oversight and support for the organ procurement, allocation, and transplantation 

system. HRSA is responsible for national coordination of organ donation activities, the funding of 

grants and special initiatives to learn more about what works to increase donation, and technical 

assistance to organ procurement organizations (OPOs) and other transplant-related entities. For 

example, HRSA recently funded 12 projects that examine strategies to increase organ and tissue 

donation, including one to assist with the development of a donor registry. 

HRSA also funds the Organ Procurement and Transplantation Network (OPTN) and the Scientific 

Registry of Transplant Recipients (SRTR). The OPTN is charged with operating and monitoring an 

equitable system for allocating organs, maintaining a waiting list of potential recipients, matching 

potential recipients with donors, and increasing organ donation. The SRTR supports the ongoing 

evaluation of the scientific and clinical status of solid organ transplantation in the United States.4 

Centers for Medicare & Medicaid Services (CMS). CMS specifies organ procurement 

service areas and certifies OPOs for participation in Medicare. Medicare provides coverage for 

End Stage Renal Disease. This coverage is unique, in that it is the only disease-specific condition 

that qualifies someone for Medicare, regardless of age. That coverage includes kidney 

transplantation. 

Since 1998, CMS has required that every hospital contact its OPO in a timely manner about 

individuals whose death is imminent or who die in the hospital. The OPO then determines 

Organ Donor Registries -1- OEI-01-01-00350 
the individual’s medical suitability for organ donation. Because the hospital notifies the OPO of 

each death or imminent death, the rule is intended to ensure that the family of every potential donor 

is informed of the option to donate organs, tissues, or eyes. 

Organ Procurement Organizations 

OPOs provide the services necessary to coordinate the identification of potential organ donors, 

requests for donation, and recovery and transport of organs. OPOs work with medical 

professionals and the public to encourage organ donation. Every hospital has an agreement with 

one OPO. 

There are 59 OPOs in operation. Each OPO serves a defined geographic area. OPOs’ service 

areas contain populations ranging from just over 1 million people to more than 11 million people. 

CMS certifies OPOs for participation in Medicare and provides funding through the Medicare 

program. 

Secretary’s Organ Donor Initiative 

Despite ongoing efforts, the gap between the need for organs and their availability continues to

grow. In April 2001, Secretary Thompson announced an initiative to encourage donation. This

initiative includes the following:

C Workplace partnerships,

C Development of a model donor card,

C Support of a national “Gift of Life” medal, 

C Development of a model curriculum for driver’s education classes, and

C A national forum on organ donor registries.

As part of this initiative, the Secretary asked the Office of Inspector General to examine existing

organ donor registries throughout the country. This report responds to that request.

Congressional Proposals 

Two bills have been introduced in the U.S. Senate to address the issue of donor registries. S. 

788 would establish a national donor registry that would work in conjunction with State registries.5 

S. 1062 would encourage development of and improve linkage among State donor registries.6 

Donor Registries 

Donor registry is a catch-all term that describes a centralized repository of information indicating a 

person’s intent to donate organs and tissues. In many States people obtaining or renewing a 

driver’s license are able to indicate if they wish to be an organ donor. In some--but not all--of 

these States, this intention is recorded in a centralized data base--the registry. 

Organ Donor Registries -2- OEI-01-01-00350 
When an OPO identifies a potential donor, it can contact the registry to determine whether the 

person indicated intent to donate. Registries can offer numerous advantages compared to 

traditional methods for increasing donations including: 

C Greater efficiency: Registries allow OPOs to more easily identify interested donors. The 

information in registries can be accessed 24 hours a day. It does not rely on the physical 

presence of a driver’s license or donor card. 

C More explicit expression of intent: Registries give the opportunity for donors to specify which 

organs they want to donate, and for what purposes (e.g., transplantation, research). 

C More persuasive evidence of intent: Registry listings provide immediate documentation of an 

individual’s wish to donate. They also allow OPO staff to prepare themselves with information 

about the potential donor’s intent before contacting donor families. 

C Larger pool of donors: Increased publicity and expanded avenues for enrollment (e.g., 

Internet-based enrollment, as well as the traditional driver’s license) allow more people to 

learn about donation and record their intent to donate. 

C Better informed donor pool: Registries allow OPOs to contact enrollees with continuing 

education about donation. Contact could lead to more committed donors and raise awareness 

about donation among the public at large. 

C More up-to-date records: Information in the registry can be revised easily for enrollees who 

change their name or address, or who change their mind about donation. 

METHODOLOGY 

We surveyed the executive directors of the nation’s 59 OPOs in August, 2001. We distributed 

the survey as an attachment to an e-mail, asking the OPO directors to return their responses by 

fax. We received responses from 55 of them (93 percent); 27 of these individuals reported that 

they had experience working with a donor registry. 

Our analysis of the role that registries play is based upon the responses of 22 OPO directors. 

We excluded from our review five of the 27 respondents based on our analysis and discussions 

with them. In one case, an individual who was serving as director of two OPOs responded 

separately for each of them, so we used only one response. In other cases, two respondents 

indicated that they had not really worked with a registry in recent years. Two other respondents 

were from States that are in the process of establishing a new registry, rather than operating an 

existing one. 

Appendix B provides the distribution of these 22 responses to the survey. 

We interviewed more than 50 knowledgeable individuals from OPOs, State agencies, and other 

organizations with involvement in organ procurement. We visited OPOs in five States where we 

interviewed key staff, procurement coordinators, and State officials. We 

Organ Donor Registries -3- OEI-01-01-00350 
focused these discussions on OPOs and States that had experience with operating a registry, as 

well as on those that were in the process of establishing a registry. 

We reviewed the Internet websites of the OPOs and States to determine what materials were 

available about donor registries and whether it was possible to enroll on-line. We also reviewed 

State laws governing donor registries. 

Throughout this report, we use the term Department of Motor Vehicles (DMV) to describe the 

State agency responsible for issuing driver’s licenses.7 Likewise, we use the term Department of 

Health to refer to the State agency responsible for health services. 

We conducted this inspection in accordance with the Quality Standards for Inspections issued 

by the President’s Council on Integrity and Efficiency. 

Organ Donor Registries -4- OEI-01-01-00350 
FINDINGS 

Organ procurement organizations and States are turning to donor 

registries as a strategy for increasing organ donation. 

Fourteen States operate registries; 22 of the nation’s 59 OPOs operate in these 

States. 

These 14 States contain 39 percent of the nation’s population and 42 percent of the total number 

of organ donors recovered in the Year 2000.8 Figure 1 shows the distribution of donor registries. 

Figure 1 

Organ Donor Registries as of October, 2001 

State-run registries 

OPO-run registries 

States with new registries 

States without registries 

In all of these States, the driver’s licensing and renewal process is the primary entrance point to 

the registry. In seven States, the Department of Motor Vehicles (DMV) maintains the data base 

of enrollees. In four States, the DMV transfers that data to the OPO, which manages the 

registry. In three States, the DMV transfers the data to the State Department of Health, which 

manages the registry. In addition to the driver’s license, many DMVs issue identification cards to 

people who do not drive. Obtaining an identification card also 

Organ Donor Registries -5- OEI-01-01-00350 
provides the opportunity for someone to enroll in the registry. 

Appendix A contains State-specific information on these registries. 

OPOs in two other States operate their own registries. 

OPOs operate registries in Alabama and New Jersey.9 These States contain 5 percent of the 

country’s population and 5 percent of donors recovered in 2000. Each of these OPOs enrolls 

the registrants and maintains the data in the registry. In Alabama, the OPO’s service area is the 

entire State; in New Jersey, the OPO (the Sharing Network) shares information with Gift of Life, 

which is based in Philadelphia and covers seven counties in the southern part of the State. 

Appendix A contains State-specific information on these registries. 

Six additional States, with 13 OPOs, have recently passed laws establishing 

registries. 

These States are now in the implementation process. These States contain 21 percent of the

country’s population and 19 percent of the total number of organ donors recovered in 2000. In

each State, the driver’s license will serve as the primary point for enrollment. Day-to-day registry

management, however, will vary. 

C In Ohio, the DMV will continue to maintain the data and manage the registry. 

C In Nevada, the data will be transferred to a private donor registry, The Living Bank, based in

Houston, Texas. 

C In Utah, the DMV will transfer the data to the OPO.10 

C In Virginia, the DMV will transfer the data to the Virginia Transplant Council, an agency in the 

Department of Health, which will manage the registry. 

C In Iowa, the Department of Public Health is authorized to contract for the establishment of a 

statewide organ and tissue donor registry. Start-up funding has not yet been appropriated. 

C In California, which enacted a registry law in October, 2001, the DMV will provide a 

standard form when people receive a driver’s license; the completed form would be mailed to 

the Department of Health, which will maintain the registry. Start-up funding has not yet been 

appropriated. 

Appendix A contains State-specific information on these new registries. 

Donor registries have provided assistance to OPOs’ organ 

procurement activities. 

Registries have led to increased effectiveness and efficiency in OPO operations. 

Identifying donors. Nineteen of 22 respondents to our survey said the registry improved 

Organ Donor Registries -6- OEI-01-01-00350 
their ability to identify a potential donor’s intent; 17 respondents said it improved the timeliness of 

identification. 

Working with next-of-kin. Even if an individual has indicated willingness to donate, it is 

practice in this country for an OPO to obtain consent from the next-of-kin. Twelve of 22 

respondents said the registry helped gain consent from next-of-kin in a timely manner. Thirteen 

respondents said that the registry information was more convincing than other methods for 

indicating intent, such as a driver’s license, donor card, or living will. 

Most OPOs do not consider a decision to enroll in the registry equivalent to consent for donation. 

Thirteen OPO directors responded they never accept that indication as primary evidence of 

consent, and four said they rarely accept it. Instead, they use enrollment as supporting 

information in their discussion with family members. Only one OPO director responded that the 

OPO always accepts the registry indication as primary evidence of consent if the family disagrees, 

and two OPOs said they occasionally accept this indication. 

Working with hospital staff. Research shows a collaborative approach between OPO staff 

and hospital staff yields the highest consent rates.11 It is reasonable to speculate that a registry 

can help to encourage a collaborative approach. Typical of this improvement are the comments 

of two procurement coordinators. One told us, “When a potential donor is listed in the registry, 

hospital staff are more willing to let us have full access to the family.” A coordinator at another 

OPO said, “If there is no registry indication, the staff may feel that they are wasting hospital 

resources since the person might not be a donor. If the indication is on the license, though, they 

feel that the person will be a donor, so it is worth tying up those resources.” 

Responses to our survey support this view. Thirteen OPO directors responded that the 

information in the registry is more convincing for hospital staff than other methods for indicating 

intent. Nine OPO directors responded that information in the registry improves their interaction 

with the hospital staff when a donor is identified. 

Limited impact on efficiency. Only half of the 22 OPO directors responding to our survey said 

that the registry had improved the overall efficiency of their OPO’s operations. Ten directors 

said that there had been no change, and only one director reported that it had hindered 

operations. 

OPOs have used data from the registry to focus public education and outreach 

about donation. 

In our interviews and site visits, OPO and DMV staff showed us how they use data from the 

registry to focus their educational efforts. Some OPOs routinely receive data from the DMV at a 

county-specific level, as well as breakdowns by age and gender. OPOs can use these data both 

to assess the impact of advertising campaigns and to identify geographic areas and populations 

that need additional education. Staff with the Illinois registry, which 

Organ Donor Registries -7- OEI-01-01-00350 
operates an extensive educational campaign, told us that they routinely assess the effects of their

targeted initiatives by monitoring changes in enrollment. The staff reported that they can

determine the impact of their targeted educational initiatives by monitoring changes in enrollment

and donation over time.

Fourteen OPO directors said the registry has led to a more informed donor pool. The majority of

OPOs responded that the registry has led them to expand public education activities. These

activities include:

C Creating new advertisements and public service announcements;

C Developing materials for educating people when they enroll in the registry;

C Providing training curriculum for DMV personnel;

C Designing educational programs for other agencies and organizations; and

C Enhancing the OPO’s web site.

Seven OPO directors responded that the registry has led them to expand all five of these

activities; five OPOs responded that the registry has led them to expand their work in four of

these activities.

However, only one OPO director reported that his organization maintained ongoing

communications with registry enrollees. This number may reflect the cost of ongoing

communication--postage and staff time are direct costs, and the OPOs may feel that funds could

be put to better use for other initiatives. Alternatively, this response may indicate that OPOs

believe that the critical activity is convincing people to join the registry in the first place. They may

consider reinforcement of that decision to be less important.

There are limits to the contribution registries can make to 

increasing the number of donors. 

Registries’ measurable impact on increasing the number of organ donors has 

been marginal. 

In responses to our surveys and in our interviews, OPO directors credited the registry with only a 

modest impact on the number of people willing to donate, donors recovered, and the consent rate 

for donation. 

Out of 21 responses to the survey, 14 OPO directors said that the number of people in their 

States willing to donate organs had increased, while seven said that there had been no change. 

Twelve OPO directors said the actual number of organ donors had increased, and 13 responded 

that families’ rate of consent had increased. However, only one director reported a large 

increase in donors, and only two reported a large increase in the consent rate. 

Organ Donor Registries -8- OEI-01-01-00350 
We reviewed data from two OPOs with several years experience in using registries. These data 

show that families of people who have enrolled in the registry provide consent for donation at a 

higher rate than do families of those who have not enrolled. However, at both OPOs, registry 

enrollees account for a relatively small proportion of all donors. 

Table 1 shows the results of this analysis. When asked to join the registry for OPO-A, “Yes” is 

recorded to indicate enrollment; if the person does not wish to join, there simply is no designation. 

At OPO-B, people are asked if they wish to join the registry, and the response can be “Yes, I 

want to enroll,” “No, I do not want to enroll,” or “No decision.” 

Both OPOs had a higher consent rate from families of people who had joined the registry. At 

OPO-A 100 percent of the families of enrollees consented; at OPO-B 76 percent of families 

gave consent. About 40 percent of the population in both States had enrolled in the registry. 

However, only one-quarter of those who actually donated had enrolled.12 

Table 1 

Comparison of Consent for Registry Enrollees and 

Non-Enrollees at Two OPOs 

OPO Registry Status Family Consent 

Rate 

Percent of All 

Donors for the 

OPO 

A Enrolled 100 % 23 % 

No Designation 49 % 77 % 

B Enrolled 76 % 25 % 

Rejected Enrollment 44 % 22 % 

No Decision 60 % 53 % 

Data provided by two OPOs for January - August, 2001. 

Registries contain only a limited number of donor indications. 

We estimate, based on data provided by the OPOs, that about 27 percent of the aggregate 

population over the age of 18 in the 14 States with registries have actually enrolled in the 

registry.13 There is wide variation in these percentages. Only two States, Georgia and Colorado, 

indicated that more than 50 percent of the over-18 population have enrolled.14 Three other 

States have enrolled between 40 and 50 percent. At the other end of the spectrum in two 

States, less than five percent had enrolled. We provide our estimates of State by State 

enrollment in Appendix A. 

It is difficult to obtain accurate data on the number of registrants. In some States, there are 

duplicate enrollments, the exact number of which are not known. For example, DMV staff 

Organ Donor Registries -9- OEI-01-01-00350 
in one State estimated that as many as 20 percent of those listed in the registry may be duplicates; 

in another State, an OPO official told us that duplicates account for between 15 and 20 percent 

of enrollees. These officials indicated that deleting duplicate enrollments would be expensive, 

while yielding little benefit: if someone’s name appeared twice in the registry, it still would result in 

only one potential donor. 

Despite the uncertainty in the data, there appears to be potential for increasing the number of 

people enrolled. It is not clear what is a realistic expectation for enrollment. One OPO director 

told us that enrollment had grown steadily in his State until recent months, when it has stagnated at 

40 percent; he was unsure if this level was temporary or if enrollment had reached an upper limit 

pending more aggressive educational campaigns and interventions. 

While registries can foster interstate sharing of information about potential donors 

from other States, the number of such cases is small. 

One purported advantage of registries is their use to link OPOs in different States. By contacting 

the registry in the decedent’s home State, an OPO could determine if that individual had enrolled. 

As Table 2 shows, out-of-State organ donors account for almost 20 percent of all donors, an 

average of 3 donors per day across the country.15 It is possible that finding the family of a 

potential donor from another State may take extra work on behalf of the OPO. It also is possible 

that more out-of-State donors could be identified if registries operated in more States, or even 

nationally. At present, however, the actual number of out-of-State donors does not appear to 

constitute a consistently heavy workload. 

2000 5,984 4,922 

(82.3 %) 

1,062 

(17.7 %) 2.9 

1999 5,810 4,710 

(81.1 %) 

1,100 

(19.9 %) 3.0 

Source: Division on Transplantation, Health Resources and Services Administration 

Table 2 

Out-of-State Organ Donors, 1999 and 2000 

Year Total 

Donors 

In-State Donors 

(% of Total) 

Out-of-State Donors 

(% of Total) 

Average Out-of-State 

Donors per Day 

In our interviews with OPO officials, they indicated that when a potential donor from another 

State is identified, the procurement coordinator contacts the OPO in the home State to determine 

how to proceed. If there is a registry in that State, the coordinator would ask the OPO to 

contact it. The home-State OPO, if it were able to obtain useful information, would then provide 

it to the OPO that initiated the request. 

Organ Donor Registries -10- OEI-01-01-00350 
We identified a number of practices that could enable OPOs to take 

fuller advantage of the opportunities that registries offer. 

In our interviews with knowledgeable individuals, both in the OPO community and elsewhere, we 

identified a number of innovations that OPOs and donor registries are using. We have not 

evaluated the success of any of these innovations. We do not claim that these approaches are the 

full range of possibilities, or are indicative of all actions currently underway. Nevertheless, we 

believe they are illustrative of the types of innovations that can maximize registries’ contribution to 

increasing donation. 

Registration 

One OPO director told us, “The most critical component of a registry is an easy way to designate 

intent. No matter how well informed and educated a potential donor is, there has to be an easy 

way to take action on their decision.” Here we describe four approaches that make it easy to 

enroll in the donor registry. 

Preprinted postage. In Michigan, the DMV has begun to include a separate preprinted, 

postage-paid form with every driver’s license renewal application. On the back of the form is a 

donor card, with the person’s name already filled in. In order to register, the person simply has 

to check the box on the card, sign it, and drop it in the mail. When the DMV receives the card, it 

scans it into a computer in a digitized format, including the individual’s signature. 

Electronic kiosks. Louisiana Organ Procurement Agency (LOPA) allows people to enroll at 

electronic kiosks that also provide public service announcements. These kiosks are located at 

the Superdome, at transplant centers, in hospital emergency rooms, and at colleges and 

universities. LOPA can tailor the individual kiosks to provide a relevant message. For example, 

the kiosks at the Superdome provide information on NFL scores and statistics; according to the 

OPO staff, “First they have to listen to a 30 second commercial on organ donation.” The kiosks 

at the universities provide students with access to their e-mail accounts. LOPA estimates that 

each kiosk costs about $5,000 to set up and operate, but the OPO is sharing the costs and ad 

revenues with sponsors. For example, medical supply companies co-sponsor the kiosks in some 

hospitals.16 

Computerized data base of donor cards. The Center for Organ Recovery and Education 

(CORE), based in western Pennsylvania and West Virginia, maintains its own separate internal 

registry, in addition to the DMV registry. This registry contains about 45,000 enrollees. The 

organization enrolled these individuals prior to the start of the DMV registry; it continues to add 

new enrollees through health fairs, educational programs, and phone-ins. CORE keeps these 

names on its own computer system, and the original signed document is kept at the CORE 

offices. This registry is an important source of enrollees since about one-third of the adult 

population in the CORE service area do not drive and, thus, do not participate in the DMV 

registry. 

Organ Donor Registries -11- OEI-01-01-00350 
Internet enrollment. OPOs from seven States told us that they use the Internet for enrollment 

into the registry. These include the OPOs in New York, Illinois, Louisiana, Michigan, and 

Colorado. In addition, the two OPO-run registries--the Sharing Network in New Jersey, and the 

Alabama Organ Center--use Internet enrollment. 

Storage 

Ready access to the registry is critical if the OPO is to use that information as it approaches 

donor families. One way of improving that access is to maintain the data at the OPO, rather than 

at the DMV. Efforts to achieve this include: 

Automatic downloads of registry data to the OPO. In Michigan, the DMV downloads the 

file with the scanned cards onto a compact disc and sends it to the OPO weekly. The DMV then 

deletes the file with those scanned cards, because it does not want to maintain personal medical 

information. In essence, the DMV acts as a conduit to get the information to the OPO, which 

then controls access to the registry information. 

Colorado has a similar arrangement. The legislation creating the registry requires the DMV to 

transfer the relevant information from the driver’s license to the OPO. (In practice, the data are 

downloaded to the contractor that Donor Alliance uses to receive referral calls about potential 

donors.) The DMV collects the basic information at driver’s license issuance/renewal and sends 

this electronically to Donor Alliance. 

Health Department maintenance of registry data. As Virginia implements its registry, the 

DMV will continue to collect information as part of the licensing process. The DMV will 

download the names of enrollees to the Virginia Transplant Council, which is part of the 

Department of Health. The Council will then manage the registry, which is accessible to both of 

the State’s OPOs and other procurement organizations. The Council has contracted with a 

vendor to buy space on the vendor’s computer system; the vendor has a toll free hotline available 

to deal with any problems that arise. 

Retrieval 

Traditionally, OPOs have accessed information by a telephone call either to the State police or 

the DMV, which then accesses its data base to determine if someone has enrolled. The 

disadvantages of this approach include busy signals, no answers, a lengthy period between the 

initial request and response, and the use of the system for other tasks and users. Efforts to 

address these problems include the following: 

Automated queries of the data. The OPOs in Colorado, Michigan, and Louisiana access the 

registry information automatically. When Colorado’s Donor Alliance receives a referral call, an 

automated query of the registry is made as part of the referral process. In Michigan calls are 

logged into the OPO computer system; before staff can close the computer screen, 

Organ Donor Registries -12- OEI-01-01-00350 
they must hit a function key that automatically queries the Registry. The Louisiana OPO uses an 

ambulance service that receives 911 calls. The referral software includes a query to get the 

name, Social Security Number, and date of birth of the potential donor. The computer then 

automatically checks the registry. 

Direct computer access to the registry. As a general rule, DMVs want to limit access to 

registries, because the information contained in their data bases goes well beyond donor 

information.17 However, in Delaware, the OPO uses a modem to dial into the registry; staff can 

then see and obtain the licensing information on the screen, with the necessary information about 

the organ donor. In Ohio, plans call for the DMV to provide the OPOs with inquiry terminals, 

through which the OPO staff can retrieve information about an individual who has joined the 

registry. 

Copy of registry information. In some states, the DMV provide verbal acknowledgment of 

the donor status. Elsewhere, the police are able to access the original license application and fax 

it to the OPO. The OPO then can determine the person’s intent and share a hard copy with the 

family. OPOs in Tennessee and Colorado told us they receive a hard copy of the information. 

Using information 

Responses to our survey showed that most OPOs do not use the indication in the registry as 

primary evidence of consent. This practice, however, appears to be changing. 

Complete evidence of consent. OPOs in two States--CORE, based in Pittsburgh, and 

Tennessee Donor Services, based in Nashville--reported they are using information from the 

donor registry as primary evidence of donor consent. They believe the indication in the registry 

provides a sufficient basis on which to proceed to recover organs without the need for formal 

consent from the next-of-kin. 

OPOs in other States are starting to use this indication for primary consent, as changes and 

clarifications in their State Uniform Anatomical Gift Acts have reinforced the primacy of these 

wishes. OPOs in Virginia, Colorado, Ohio, and Utah told us they are moving or have moved 

recently towards using the donor indication in the registry as sufficient for recovery without the 

need for further consent.18 

These OPO staff and directors told us they need physical evidence of the donor’s intent prior to 

proceeding. They will not go forward with recovery solely on the basis of a telephone message. 

One director told us his OPO staff needs the original signed donor card or driver’s license. 

Others told us that a facsimile copy or electronic copy suffices. A copy of the document is 

placed in the hospital record and the OPO recovery record. 

It is important to recognize in these cases that the OPO does not merely procure organs without 

any discussion with the family. Rather, OPO staff approach the family with words 

Organ Donor Registries -13- OEI-01-01-00350 
along the lines of, “Your loved one made a decision to donate, and this is what needs to be done 

to carry out those wishes.” 

We identified four reasons that OPO staff and directors gave for proceeding with procurement on 

the basis of the driver’s document alone: 

C Most people who have signed a driver’s license or donor card assume they have signed up to 

be a donor, not that they merely are having their name entered into a registry. 

C OPO procurement staff and requestors told us that using the document as evidence of 

donation “makes it easier on the family. They already are dealing with a tragic situation, and 

anything we can do to make it easier is worthwhile.” 

C A registry serves little purpose if it is not used for consent. One OPO director summarized this 

concern when she told us, “This is the only thing that makes sense with a Registry. If you 

don’t act on the individual’s wishes stated there, then why bother to do it.” Another OPO 

director told us, “The government and OPOs spend millions of dollars on donor cards, but 

they never use them. Why are we spending this money if they don’t mean something?” 

C Families rarely override the registry information. One director told us that, “We have 

procured over 4,000 organ and tissue donors on the basis of the registry. In that time, we 

have had only three families object to our going ahead. We’ve continued to work with those 

families, and two of them are now very active supporters in our organization.” 

Other OPOs, however, have chosen to not proceed with donation on the basis of the registry 

indication alone. The ways in which these OPOs use the registry information vary widely. In 

some OPOs, the staff do not share this information with the family unless a member of the family 

asks specifically if the OPO knows what the person wanted. 

Elsewhere, OPO staff use the information more aggressively. Rather than simply approach the 

family and request consent, the conversation takes on a different tone, so that “it is an affirmation 

of his wishes,” rather than requesting consent. While these OPOs do not proceed with 

procurement if the family objects, this approach does make a basic assumption that the 

decedent’s wishes will be carried out. 

One director who does not use the card as primary consent typified concerns of others when he 

cited “philosophical difference with others” on the extent to which his OPO will use the 

information. He cited four reasons for not using the card as primary consent: 

C He has concerns about the accuracy of the registry data base. For example, the address in the 

registry may differ from the address on a decedent’s driver’s license. 

C Members of the OPO board of directors are “nervous about the front page image of 

overriding a family decision.” Most families go along with the indication, but the OPO 

Organ Donor Registries -14- OEI-01-01-00350 
staff do not want to force the issue if the family is opposed. 

C Even if the donor card is legal consent, the OPO still must get the medical-social history from 

the family. If the family does not cooperate in providing that information, the organs and 

tissues might not be able to be used. 

C He is skeptical of claims that productivity will be increased by using only the donor card. “The 

registry and that information is only one part of the process of obtaining consent.” The OPO 

staff feel more comfortable presenting the information about enrollment to the family during the 

discussion about donation, rather than making an assumption based on what was contained in 

the data base. 

Organ Donor Registries -15- OEI-01-01-00350 
RECOMMENDATIONS 

We conclude from our review that caution should be exercised to avoid over-promising on the 

contributions that donor registries, by themselves, can make toward increasing donation. 

Registries are one tool available to OPOs, and they add value to OPOs’ efforts. 

But we also found that registries’ impact on increasing the number of organs available has been 

marginal. However, with almost 80,000 seriously ill Americans waiting for an organ transplant, 

even marginal improvements are important. 

Our review also found that the majority of the population in this country reside in states that 

currently have a registry or are in the process of implementing legislation to establish a registry. In 

addition, most other States are considering establishing registries. 

In light of this, we believe the most appropriate use of Department resources with respect to 

donor registries is to foster ways to enhance their effectiveness. Toward that end, our 

recommendations focus on two strategies the Department should adopt: A clearinghouse of 

information on donor registries and research on maximizing their potential impact. 

HRSA should establish a mechanism to provide for dissemination of information 

on donor registries that can be used by the organ procurement community, State 

governments, and other relevant entities. 

The purpose of the clearinghouse would be to enhance the effectiveness of donor registries. 

Through the clearinghouse, HRSA could support information sharing among the States and 

OPOs. This sharing might include, for example, making experts available to work on 

implementation issues. The clearinghouse might serve as a forum for convening conferences, with 

technical papers that focus on protocols, effective standards, and successful practices. 

In this report we identified a number of innovative practices and approaches that appear to offer 

promise for enhancing effectiveness. Undoubtedly there are other approaches that the 

clearinghouse could share. 

We would urge that the clearinghouse pay particular attention to three areas: 

C Automation. We found limited use of automated approaches that take advantage of current 

technology in the operation of registries. Our survey of OPO directors revealed that technical 

difficulties related to retrieval of information are an important constraint on the usefulness of 

registries. Certainly, one focus could be on ways of making data retrieval more efficient and 

useful. 

Organ Donor Registries -16- OEI-01-01-00350 
C Innovation. The driver’s licensing process continues to be the main gateway for registry 

enrollment. Innovations could be particularly useful in identifying and developing new avenues 

for enrolling in the registry. For example, consideration could be given to expanding the use of 

technology to enroll people through Web Sites or through the Internet at community events. 

Other countries also could provide lessons about approaches to enrolling people in donor 

registries. From a limited review of such methods, we found that other countries use many 

methods in addition to the licensing process to register enrollees. These methods include forms 

at physicians offices and pharmacies, as well as credit card solicitations.19 

C Education. OPOs have many tools they use to educate the public about donation. A 

clearinghouse could provide other organizations with information about which tools have 

proven effective in informing the public about the registry, its benefits, and the need for organs. 

To the extent that funding is available, HRSA could support research projects that 

seek to maximize the potential impact of donor registries. 

HRSA already provides grant assistance to entities in order to improve the effectiveness of the 

organ donation and transplantation system. Below, we describe two useful areas of inquiry for 

additional research on donor registries. 

What more can be done to tap the potential of registries? Even those registries in place for 

many years contain a minority of the State’s population. Questions that might be addressed 

include: 

C Are there ways to provide better education about donation while people are waiting in line to 

get their driver’s license or before they arrive at the DMV? 

C What are effective alternatives to that licensing process as a way of registering people? 

C If people are reluctant to list their names in a large database, what can be done to allay those 

fears? 

C How can donation, and consideration of joining a registry, be better incorporated into 

discussions about end-of-life issues? 

How widespread are concerns about using the registry as primary consent for donation? 

More OPOs are using or planning to use the indication in the registry as evidence of consent,

rather than relying on consent from the family. This raises a number of questions, including: 

C How informed are people when they join a registry? 

C Do they view enrollment as providing consent for donation? 

C What are family expectations and understandings about joining the registry?

Organ Donor Registries -17- OEI-01-01-00350 
COMMENTS ON THE DRAFT REPORT 

We received comments on the draft report from the Department’s Health Resources and 

Services Adminstration (HRSA), which houses the Division of Transplantation. 

HRSA concurs with our report and recommendations, particularly our recommendation that 

HRSA establish a clearinghouse to promote information sharing and technical assistance. In 

addition, the agency made a number of technical comments. We appreciate HRSA’s 

concurrence in our report, as well as the agency’s ongoing work in support of increasing 

donation. We have incorporated the agency’s technical comments in this final report. 

The Association of Organ Procurement Organizations (AOPO) also provided comments. 

AOPO raises three broad issues. We summarize each issue and give our response in italics. 

First, AOPO believes that while our report provides useful information on the current status of 

registries, it may understate their future value. We base our report on the experiences of those 

who have worked with donor registries, and on a review of available data about registries. 

This review leads us to conclude that registries can be a useful tool in organ procurement. 

But we urge caution in assuming that establishing a registry will lead directly to a dramatic 

increase in the number of donors. That has not been the experience to date. At the same 

time, however, given the critical need for donors, even a moderate increase in their number 

can be beneficial. We certainly would encourage ongoing evaluation of new registries and 

other initiatives intended to increase donation. 

Second, AOPO urges that additional attention be paid to donor preference legislation. Such 

legislation would consider an individual’s decision to join a registry as documentation for consent, 

rather than as a declaration of intent that would require familial consent. Where we discuss how 

OPOs use registry information as evidence of consent, we do so to present a balanced view 

of this controversial issue within the context of registry operations. The discussion in our 

report clearly shows that there are multiple views on this issue, even within the organ 

procurement community. 

Third, AOPO cites the value of ongoing work with States about donation initiatives and new 

legislation. We agree that State officials are key parties in developing programs to increase 

donation. The Secretary, HRSA, and other agencies of the Department continue to work 

actively with State officials on donation issues. For example, as cited in AOPO’s 

comments, HRSA convened a conference on donor registries in November, 2001, which 

facilitated networking among State officials and organ procurement agencies. We also 

believe, however, that it is incumbent upon the local organ procurement organizations to 

perform ongoing education and dissemination for their elected State and local officials. 

Appendix C contains the full text of both sets of comments. 

Organ Donor Registries -18- OEI-01-01-00350 
Description of Donor Registry Features APPENDIX A 

State Number 

of OPOs 

Primary 

Manager 

Enrollment 

Methods 

Primary Method of 

Access to Data 

Who has access 

to Data 

Estimated 

Enrollmen 

t* 

% of 

adults in 

Registry 

Cadaveric 

Donors in 

2000 

Statute 

State Registries 

Arkansas 1 DMV Driver’s License, 

Mail-in Card OPO via Internet OPO 807,000 40% 35 Chapter 75 of 1997 

Colorado 1 OPO Driver’s License, Internet, 

Mail in Card OPO computer OPO 1,800,000 56% 78 

Senate Bill 00-054 

(2000), Chapter 175 of 

2000, CRS 12-34-101.5 

Delaware 2 DMV Driver’s License OPO via Internet, 

DMV 

OPO, State 

Police, DMV 219,000 37% 24 DE Statutes Title 16, §2724 

Florida 5 Agency Health 

Care Admin. 

Driver’s License, Mail-in 

card OPO via Internet OPO 2,800,000 23% 440 FL Statutes, §765 

Georgia 1 OPO Driver’s License, 

Mail-in card OPO via Internet OPO, DMV 3,200,000 53% 170 CGA §40-5-25 (Chapter 

608 of 1996) 

Illinois 2 DMV Driver’s License, Internet, 

Mail-in card 

Telephone to 

Secretary of State’s 

Police 

State Police, 

DMV 4,100,000 45% 284 625 ILCS 5/6-110 

Louisiana 1 OPO Driver’s License, Internet, 

Mail-in card OPO via Internet OPO, DMV 711,000 22% 100 RS Chapter 32, §410 

Maryland 2 DMV Driver’s License, 

Mail-in card 

Telephone to State 

Police State Police 1,445,000 37% 106 Chapter 1, Acts of 1998 

Michigan 1 OPO Driver’s License, Internet, 

Mail-in card OPO computer OPO 310,000 4% 199 Vehicle Code §307 

Missouri 2 Health Dept. Driver’s License OPO via Internet OPO, Health 

Department 1,800,000 43% 156 MoRS Chapter 194.304 

(HB 178 of 1995) 

New York 4 Health Dept. Driver’s License, Internet, 

Mail-in card OPO via Internet OPO, DMV 123,000 1% 334 

Pennsylvan 

ia 2 DMV Driver’s License Telephone to DMV OPO 3,500,000 37% 366 Act 102, 1994 

Organ Donor Registries -19- OEI-01-01-00350 
Description of Donor Registry Features APPENDIX A 

State Number 

of OPOs 

Primary 

Manager 

Enrollment 

Methods 

Primary Method of 

Access to Data 

Who has access 

to Data 

Estimated 

Enrollmen 

t* 

% of 

adults in 

Registry 

Cadaveric 

Donors in 

2000 

Statute 

Tennessee 2 DMV Driver’s License Telephone to DMV OPO, State 

Police 650,000 15% 136 Tenn Statutes, §4-3-2011 

West 

Virginia 1 DMV Driver’s License OPO via Internet OPO 270,000 19% 46 WV Code, Article 1B, 

§17B-1B 

OPO-Run Registries 

Alabama 1 OPO Internet, Mail-in Card OPO computer OPO 2,000 <1% 127 

New Jersey 2 OPO Internet, Mail-in card OPO computer OPO 1,400 <1% 174 

New Registries 

California 4 Health Dept. 571 Senate Bill 108 (2001) 

Iowa 1 Health Dept. 62 2000 Acts, Chapter 1052, 

§2 

Nevada 2 Living Bank 44 Assembly Bill 497 

(2001), Chapter 460 NRS 

Ohio 4 DMV 254 Senate Bill 188 (2000) 

Utah 1 OPO 50 Chapter 117 (2001) 

Virginia 2 Health Dept. 123 

Virginia Code, §32.1-

292.2, Chapters 481 & 

490 (2000) 

*enrollment estimate for Summer, 2001. Exact date varies by State. 

Organ Donor Registries -20- OEI-01-01-00350 
APPENDIX B Responses to Survey of OPO Directors 

I. Efficiency 

Improved 

Greatly 

Improved 

Somewhat 

No 

Change 

Hindered 

Somewhat 

Hindered 

Greatly 

Missin 

g 

Overall, how has working with a donor 

registry affected the efficiency of your 

OPO’s operation? 

3 8 10 1 0 0 

More specifically, how has the registry 

affected your OPO’s ability to: 

Identify a potential donor’s intent? 6 13 2 0 0 1 

Get information about a decedent’s 

intent in a timely manner? 7 10 4 0 0 1 

Gain consent from next-of-kin in a 

timely manner? 1 11 8 0 0 2 

Interact with hospital staff when a 

potential donor is identified? 1 8 12 0 0 1 

II. Accepting Donor Intent 

Much More 

Convincing 

Somewhat 

More 

Convincing 

No 

Difference 

Somewhat 

Less 

Convincing 

Much Less 

Convincing 

Missin 

g 

Overall, how does the registry 

compare with other indications of 

intent in its persuasiveness? 

5 7 4 2 0 4 

More specifically, how persuasive 

do the following parties find 

intent stated in the registry: 

Next-of-kin? 7 6 3 1 0 5 

OPO staff? 8 3 6 0 0 5 

Hospital staff? 11 2 3 1 0 5 

Coroner/ medical examiner? 7 1 7 1 0 6 

Organ Donor Registries -21- OEI-01-01-00350 
Responses to Survey of OPO Directors APPENDIX B 

Always Frequently Occasionally Rarely Never Missing 

Does your OPO accept the registry’s 

documentation of intent as consent for 

donation, even if the family disagrees? 

1 0 2 4 13 2 

III. Size of Donor Pool 

What effect would you say that 

the registry has had on: 

Increased 

Greatly 

Increased 

Somewhat 

No 

Change 

Decreased 

Somewhat 

Decreased 

Greatly Missing 

The number of people in your state 

willing to donate organs? 3 11 7 0 0 1 

The number of organ donors that 

your OPO has recovered? 1 11 9 0 0 1 

The consent rate for organ donation? 2 11 8 0 0 1 

IV. Better Informed Donor Pool 

Much 

More 

Informed 

Somewhat More 

Informed No 

Change 

Somewhat 

Less 

Informed 

Much 

Less 

Informed 

Missing 

Overall, how would you assess the 

effect of the registry on the public’s 

knowledge about donation? 

3 12 6 0 0 1 

More specifically, has having a registry led you to expand public education in any of the 

following areas: 

Yes No 

Advertising and public service announcements? 15 7 

Development of materials for distribution at enrollment? 16 6 

Training curriculum for State motor vehicle agency personnel? 13 9 

Educational programs for other agencies/ organizations? 15 7 

Establishment/ expansion of your OPO’s web site? 14 8 

Ongoing communication with registry enrollees? 1 21 

Organ Donor Registries -22- OEI-01-01-00350 
APPENDIX B Responses to Survey of OPO Directors 

V. Reliability of Information 

Always Usually Rarely Missing 

Overall, would you say the information in the 

registry is reliable? 8 11 1 2 

More specifically, is the information: 

Up-to-date? 5 13 2 2 

Accurate? 6 12 1 3 

VI. Concerns 

Have you encountered problems with the registry in any of the following areas: 

Major 

Problems 

Minor 

Problems 

No 

problems Missing 

Privacy of personal information? 1 2 18 1 

Start up costs? 5 4 10 3 

Ongoing operational costs? 3 6 11 2 

Computer problems? 5 10 6 1 

Accessibility by telephone? 2 5 10 5 

VII. Registry Profile 

What organization has primary responsibility for administering the registry? 

Your OPO 6 

State motor vehicle agency 7 

State department of health 3 

Organ Donor Registries -23- OEI-01-01-00350 
APPENDIX B Responses to Survey of OPO Directors 

Which of these methods can people use to enroll in the registry? 

Yes No 

Driver's license application/ renewal process 14 2 

Internet sign up 7 9 

Mail-in card 11 5 

How does your OPO get information from the registry about a potential donor? 

Yes No 

OPO staff obtain information directly from 

registry via Internet/ computer 12 4 

OPO contacts State police, which provides 

information from the registry 2 14 

OPO contacts motor vehicle agency, which 

provides information from the registry 3 13 

Who has direct access to the registry for information about a potential donor’s intent? 

Yes No 

OPO staff 14 2 

State police 4 12 

State motor vehicle agency 6 10 

State department of health 2 14 

Organ Donor Registries -24- OEI-01-01-00350 
APPENDIX 

C 

Comments on the Draft Report 

Page 

Health Resources and Services Administration ...................................... 26 

Association of Organ Procurement Organizations .................................... 29 

Organ Donor Registries -25- OEI-01-01-00350 
APPENDIX 

C 

Organ Donor Registries -26- OEI-01-01-00350 
APPENDIX 

C 

Organ Donor Registries -27- OEI-01-01-00350 
APPENDIX 

C 

Organ Donor Registries -28- OEI-01-01-00350 
APPENDIX 

C 

Organ Donor Registries -29- OEI-01-01-00350 
APPENDIX 

C 

Organ Donor Registries -30- OEI-01-01-00350 
APPENDIX 

D 

Endnotes 

1. United Network for Organ Sharing, http://www.unos.org, January 4, 2002 

2. Steven Gortmaker, Carol Beasely, et al., “Organ Donor Potential and Performance: Size and 

Nature of the Organ Donor Shortfall,” Critical Care Medicine, 24: 432-439. 

3. United Network for Organ Sharing. 

4. The United Network for Organ Sharing, a nonprofit organization based in Richmond, Virginia, holds 

the contract to operate the OPTN. The University Renal Research and Education Association, based 

in Ann Arbor, in collaboration with the University of Michigan, holds the SRTR contract. 

5. S. 788 was introduced by Senator Schumer. A House companion version of this bill, H.R. 2645, 

was introduced by Representative Boswell. 

6. S. 1062 was introduced by Senator Durbin and others. 

7. The agency responsible for issuing driver’s licenses is also called the Bureau of Motor Vehicles, 

Office of Motor Vehicles, Registry of Motor Vehicles, or the Motor Vehicle Administration. 

8. Arkansas, Colorado, Delaware, Florida, Georgia, Illinois, Louisiana, Maryland, Michigan, Missouri, 

New York, Pennsylvania, Tennessee, and West Virginia. 

9. The Alabama Organ Center and the New Jersey Organ and Tissue Sharing Network. 

10. The Health Resources and Services Administration (HRSA) is supporting the development of the 

Utah registry through a grant that will “study the utility of a new, comprehensive, centralized statewide 

organ and tissue donor registry system and its impact on declarations of intent, consent rates, and organ 

and tissue donation. The project also will use the registry to evaluate both interest in, and actual, 

unrelated living donation rates within a multi-hospital system.” (HRSA press release.) 

11. William DeJong et al., “Requesting Organ Donation: An Interview Study of Donor and Nondonor 

Families,” American Journal of Critical Care 7 (January 1998) 1: 13-23; Michael J. Evanisko et al., 

“Readiness of Critical Care Physicians and Nurses to Handle Requests for Organ Donation,” 

American Journal of Critical Care 7 (January 1998) 1: 4-12; Patrick McNamara and Carol Beasley, 

“Determinants of Familial Consent to Organ Donation in the Hospital Setting,” Clinical Transplants 

1997, Cecka and Terasakai, Eds., (UCLA Tissue Typing Laboratory, 1998), 219-229. 

12. All differences are significant at p<.01, using a Chi-square test. 

Organ Donor Registries -31- OEI-01-01-00350 
APPENDIX 

D 

13. We use the over-18 population both because it tends to be the age of majority, and it reflects those 

likely to have applied for a driver’s license. About 20 percent of the total population has enrolled in 

those States. 

14. Georgia discounts the cost of a driver’s license renewal, down to $8 from $15, for those who 

enroll in the registry. The total for Colorado includes people who had signed their driver’s license 

showing an intent to be a donor prior to the establishment of the registry.. 

15. We recognize that there is seasonal and daily variation in donation rates, and that some States 

encounter more out-of-State donors than others; yet the point remains that the burden is simply not that 

large. 

16. The development and use of these kiosks has been supported through a grant from HRSA. 

17. In some States, the DMV data base may include such information as voting registration, criminal 

convictions, and child support judgements. 

18. Four OPOs operate in Ohio. At this point, it is not clear if all of them will use the registry 

indication as primary consent. 

19. We looked at available literature and conducted an Internet review of enrollment in other countries. 

In British Columbia, Canada, for example, people may enroll in the registry at all doctors' offices, 

pharmacies, automobile insurers, and credit unions, in addition to the DMV. 

In the United Kingdom, people can enroll when renewing their driver's license or passport, when 

registering with a new general practitioner, or online through the National Health Service website. In 

addition, many credit card application forms allow customers to sign up for the registry. 

The Australian Health Insurance Commission (HIC), which administers the country’s universal health 

insurance program, maintains the register. HIC uses a resident's health number to organize donation 

information. Residents can enroll by printing a form at the HIC website and mailing it in to HIC. There 

are also sign-up forms at every Medicare office. In addition, many states have registries connected to 

the driver's license renewal process and the information they collect is forwarded to the national 

register. 

Organ Donor Registries -32- OEI-01-01-00350