Department of Health and Human Services 
OFFICE OF 
INSPECTOR GENERAL 
Organ Donor Registries 
A Useful, but Limited, Tool 
JANET REHNQUIST 
Inspector General 
FEBRUARY 2002 
OEI-01-01-00350  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  E X E C U T I V E   S U M M A R Y  
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 drivers license may indicate an intent to be a 
donor. In somebut not allStates, 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. 
-i-
Organ Donor Registries  OEI-01-01-00350  C	 Fourteen States operate registries; 22 of the nations 59 OPOs operate in these States. 
These States contain 39 percent of the nations 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 countrys 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 countrys 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 
decedents wishes about donation.  They also told us the registry information is convincing for 
the decedents 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 
-ii-
Organ Donor Registries  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 States population.  Are there better ways to educate people 
about donation and joining the registry? What are alternatives to the drivers 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? 
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Organ Donor Registries  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. 
-iv-
Organ Donor Registries  OEI-01-01-00350  T A B L E  O F  C O N T E N T S  
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  I N T R O D U C T I O N  
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 Departments Role in Organ Donation 
Health Resources and Services Administration (HRSA). HRSAs 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 
-1-
Organ Donor Registries  OEI-01-01-00350  the individuals 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. 
Secretarys 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 drivers 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 
persons intent to donate organs and tissues. In many States people obtaining or renewing a 
drivers 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. 
-2-
Organ Donor Registries  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 drivers 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 
individuals wish to donate. They also allow OPO staff to prepare themselves with information 
about the potential donors 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 drivers 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 nations 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 
-3-
Organ Donor Registries  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 drivers 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 Presidents Council on Integrity and Efficiency. 
-4-
Organ Donor Registries  OEI-01-01-00350  F I N D I N G S  
Organ procurement organizations and States are turning to donor 
registries as a strategy for increasing organ donation. 
Fourteen States operate registries; 22 of the nations 59 OPOs operate in these 
States. 
These 14 States contain 39 percent of the nations 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 drivers 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 drivers license, many DMVs issue identification cards to 
people who do not drive.  Obtaining an identification card also 
-5-
Organ Donor Registries  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 
countrys 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 OPOs 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

countrys population and 19 percent of the total number of organ donors recovered in 2000. In

each State, the drivers 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 drivers 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 
-6-
Organ Donor Registries  OEI-01-01-00350  their ability to identify a potential donors 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 drivers 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 OPOs 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 
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Organ Donor Registries  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 OPOs 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. 
-8-
Organ Donor Registries  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 
Percent of All 
Family Consent 
OPO  Registry Status  Donors for the 
Rate 
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 
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Organ Donor Registries  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 someones 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 decedents 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. 
Table 2 
Out-of-State Organ Donors, 1999 and 2000 
Total  In-State Donors  Out-of-State Donors  Average Out-of-State 
Year 
Donors  (% of Total)  (% of Total)  Donors per Day 
4,922  1,062 
2000  5,984  2.9 
(82.3 %)  (17.7 %) 
4,710  1,100 
1999  5,810  3.0 
(81.1 %)  (19.9 %) 
Source:  Division on Transplantation, Health Resources and Services Administration 
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. 
-10-
Organ Donor Registries  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 drivers license renewal application. On the back of the form is a 
donor card, with the persons 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 individuals 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. 
-11-
Organ Donor Registries  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 drivers 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 drivers 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 States OPOs and other procurement organizations. The Council has contracted with a 
vendor to buy space on the vendors 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 Colorados 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, 
-12-
Organ Donor Registries  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 persons 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 donors 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 drivers 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 
-13-
Organ Donor Registries  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 drivers document alone: 
C	 Most people who have signed a drivers 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 
dont act on the individuals 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 dont 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. Weve 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 
decedents 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 decedents drivers 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 
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Organ Donor Registries  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. 
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Organ Donor Registries  OEI-01-01-00350  R E C O M M E N D A T I O N S  
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. 
-16-
Organ Donor Registries  OEI-01-01-00350  C	 Innovation.  The drivers 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 States 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 drivers 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?

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Organ Donor Registries  OEI-01-01-00350  C O M M E N T S   O N   T H E   D R A F T   R E P O R T  
We received comments on the draft report from the Departments 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 HRSAs 
concurrence in our report, as well as the agencys ongoing work in support of increasing 
donation. We have incorporated the agencys 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 individuals 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 AOPOs 
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. 
-18-
Organ Donor Registries  OEI-01-01-00350  Description of Donor Registry Features 
APPENDIX A 
Estimated  % of  Cadaveric 
Number  Primary  Enrollment  Primary Method of  Who has access 
State  Enrollmen  adults in  Donors in  Statute 
of OPOs  Manager  Methods  Access to Data  to Data 
t*  Registry  2000 
State Registries 
Arkansas  Drivers License, 
1  DMV  OPO via Internet  OPO  807,000  40%  35 Chapter 75 of 1997 
Mail-in Card 
Senate Bill 00-054 
Drivers License, Internet, 
Colorado  1  OPO  OPO computer  OPO  1,800,000  56%  78 (2000), Chapter 175 of 
Mail in Card 
2000, CRS 12-34-101.5 
OPO via Internet,  OPO, State  DE Statutes Title 16, 
Delaware  2  DMV  Drivers License  219,000  37%  24 
DMV  Police, DMV  2724 
Agency Health  Drivers License, Mail-in  2,800,000 
Florida  5  OPO via Internet  OPO  23%  440 FL Statutes, 765 
Care Admin.  card 
Drivers License,  CGA 40-5-25 (Chapter 
Georgia  1  OPO  OPO via Internet  OPO, DMV  3,200,000  53%  170 
Mail-in card  608 of 1996) 
Telephone to 
Drivers License, Internet,  State Police, 
Illinois  2  DMV  Secretary of States  4,100,000  45%  284 625 ILCS 5/6-110 
Mail-in card  DMV 
Police 
Drivers License, Internet, 
Louisiana  1  OPO  OPO via Internet  OPO, DMV  711,000  22%  100 RS Chapter 32, 410 
Mail-in card 
Drivers License,  Telephone to State 
Maryland  2  DMV  State Police  1,445,000  37%  106 Chapter 1, Acts of 1998 
Mail-in card  Police 
Drivers License, Internet, 
Michigan  1  OPO  OPO computer  OPO  310,000  4%  199 Vehicle Code 307 
Mail-in card 
OPO, Health  MoRS Chapter 194.304 
Missouri  2  Health Dept.  Drivers License  OPO via Internet  1,800,000  43%  156 
Department  (HB 178 of 1995) 
Drivers License, Internet, 
New York  4  Health Dept.  OPO via Internet  OPO, DMV  123,000  1%  334 
Mail-in card 
Pennsylvan 
2  DMV  Drivers License  Telephone to DMV  OPO  3,500,000  37%  366 Act 102, 1994 
ia 
Organ Donor Registries  -19- OEI-01-01-00350  Description of Donor Registry Features 
APPENDIX A 
Estimated  % of  Cadaveric 
Number  Primary  Enrollment  Primary Method of  Who has access 
State  Enrollmen  adults in  Donors in  Statute 
of OPOs  Manager  Methods  Access to Data  to Data 
t*  Registry  2000 
OPO, State 
Tennessee  2  DMV  Drivers License  Telephone to DMV  650,000  15%  136 Tenn Statutes, 4-3-2011 
Police 
West  WV Code, Article 1B, 
1  DMV  Drivers License  OPO via Internet  OPO  270,000  19%  46 
Virginia  17B-1B 
OPO-Run Registries 
Alabama  1  OPO  Internet, Mail-in Card  OPO computer  OPO  2,000  <1%  127 
Internet, Mail-in card 
New Jersey  2  OPO  OPO computer  OPO  1,400  <1%  174 
New Registries 
California  4  Health Dept.  571 Senate Bill 108 (2001) 
2000 Acts, Chapter 1052, 
Iowa  1  Health Dept.  62 
2 
Assembly Bill 497 
Nevada  2  Living Bank  44 
(2001), Chapter 460 NRS 
Ohio  4  DMV  254 Senate Bill 188 (2000) 
Utah  1  OPO  50 Chapter 117 (2001) 
Virginia Code, 32.1-
Virginia  2  Health Dept.  123 292.2, Chapters 481 & 
490 (2000) 
*enrollment estimate for Summer, 2001. Exact date varies by State. 
Organ Donor Registries  -20- OEI-01-01-00350  Responses to Survey of OPO Directors 
APPENDIX B
I. Efficiency 
Improved  Improved  No  Hindered  Hindered  Missin 
Greatly  Somewhat  Change  Somewhat  Greatly  g 
Overall, how has working with a donor 
registry affected the efficiency of your  3  8  10  1  0  0 
OPOs operation? 
More specifically, how has the registry 
affected your OPOs ability to: 
Identify a potential donors intent?  6  13  2  0  0  1 
Get information about a decedents 
7  10  4  0  0  1 
intent in a timely manner? 
Gain consent from next-of-kin in a 
1  11  8  0  0  2 
timely manner? 
Interact with hospital staff when a 
1  8  12  0  0  1 
potential donor is identified? 
II. Accepting Donor Intent 
Somewhat  Somewhat 
Much More  No  Much Less  Missin 
More  Less 
Convincing  Difference  Convincing  g 
Convincing  Convincing 
Overall, how does the registry 
compare with other indications of  5  7  4  2  0  4 
intent in its persuasiveness? 
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 
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Organ Donor Registries  OEI-01-01-00350  Responses to Survey of OPO Directors 
APPENDIX B 
Always  Frequently  Occasionally  Rarely  Never  Missing 
Does your OPO accept the registrys 
documentation of intent as consent for  1  0  2  4  13  2 
donation, even if the family disagrees? 
III. Size of Donor Pool 
What effect would you say that  Increased  Increased  No  Decreased  Decreased 
Missing 
the registry has had on:  Greatly  Somewhat  Change  Somewhat  Greatly 
The number of people in your state 
3  11  7  0  0  1 
willing to donate organs? 
The number of organ donors that 
1  11  9  0  0  1 
your OPO has recovered? 
The consent rate for organ donation?  2  11  8  0  0  1 
IV. Better Informed Donor Pool 
Much  Somewhat More  Somewhat  Much 
No 
More  Informed  Less  Less  Missing 
Change 
Informed  Informed  Informed 
Overall, how would you assess the 
effect of the registry on the publics  3  12  6  0  0  1 
knowledge about donation? 
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 OPOs web site?  14  8 
Ongoing communication with registry enrollees?  1  21 
-22-
Organ Donor Registries  OEI-01-01-00350  Responses to Survey of OPO Directors 
APPENDIX B
V. Reliability of Information 
Always  Usually  Rarely  Missing 
Overall, would you say the information in the 
8  11  1  2 
registry is reliable? 
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  Minor  No 
Missing 
Problems  Problems  problems 
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 
-23-
Organ Donor Registries  OEI-01-01-00350  Responses to Survey of OPO Directors 
APPENDIX B
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 
12  4 
registry via Internet/ computer 
OPO contacts State police, which provides 
2  14 
information from the registry 
OPO contacts motor vehicle agency, which 
3  13 
provides information from the registry 
Who has direct access to the registry for information about a potential donors intent? 
Yes  No 
OPO staff  14  2 
State police  4  12 
State motor vehicle agency  6  10 
State department of health  2  14 
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Organ Donor Registries  OEI-01-01-00350  APPENDIX 
C 
Comments on the Draft Report 
Page 
Health Resources and Services Administration  ......................................26 
Association of Organ Procurement Organizations  ....................................29 
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Organ Donor Registries  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 drivers 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. 
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Organ Donor Registries  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 drivers license. About 20 percent of the total population has enrolled in 
those States. 
14. Georgia discounts the cost of a drivers license renewal, down to $8 from $15, for those who 
enroll in the registry.  The total for Colorado includes people who had signed their drivers 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 countrys 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. 
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Organ Donor Registries  OEI-01-01-00350