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The Swedish national donor register
ELSEVlER
The Swedish National Donor Register H. Gabel and N. Rehnqvist
A
GOVERNMENT committee, appointed to review transplant legislation and to consider a National donor register, suggested that the disadvantages of a donor register seemed to outweigh the advantages. Nevertheless, government decided there should be a donor register for the individual as a safe way to make his stand on donation known. The National Board of Health and Welfare was commissioned by government to design and run such a National Donor Register which was to be operational by July 1, 1996 as the new law came into effect. Furthermore, the Board was commissioned to issue guidelines for the medical profession, design donor cards, and inform the general public about the new transplant act. This new law states that, in the absence of any information, the individual is presumed to be in favor of donation of organs and other biologic material. The relatives have the option to veto donation. The transplant act (presumed consent, opting out) became effective July 1, 1996. The Board was to motivate the individual to take a stand on donation and to make that stand known in one or more of three ways: by informing relatives, by signing a donor card, or by notifying the donor register.
METHODS On the basis of information from foreign operational registries, after an analysis of critical points, and after consultations with the Data Inspection Board, the donor register was designed. It is a mainframe national donor register linked with the national population register where current addresses are stored. Everyone residing in Sweden having a Swedish lo-digit registration number can register. There are three options: yes to donation for transplantation and other medical purposes, for transplantation only, and no to any donation. Those who accept donation can make exceptions for organs/tissues they do not want to donate. Only signed applications arc accepted. Forms, together with basic information on the Transplant act were distributed as a household drop. In addition, information is available in pharmacies and hospitals. Only a limited number of professionals engaged in the procurement of cadaver organs and tissues are licensed to have access to the register via a PC and a modem. They may ask for information on deceased persons only. Requests on dying patients are not allowed. Data are available around the clock. There is a continuous logging of all requests for information to make sure there are no unauthorized entries or requests for information on persons alive.
0 1997 by Elsevier Science Inc. 655 Avenue of the Americas,
New York, NY 10010
Transplantation
29, 3677-3678
Proceedings,
(1997)
RESULTS
number of registrations exceeded all estimates made in advance. During the first three months, there were 1.1 million notifications. As of June, 1997, there are still some 2000 every month. There are >1,400,000 individuals, 15% of the Swedish population, in the register. We analyzed the notifications of the first 300,000 persons to the register, to make sure the register was used both by those in favor of donation as well as by those opposed; 52% were opposed and 48% in favor. Among the young there was a majority (66%) in favor of donation; 66% of those between 18 and 29 were positive to donation while only 29% of those older than 70 years old were positive. It should be pointed out that the registration is not a survey of attitudes. A mail survey’ performed in August of 1996 of 1,500 persons 18 to 70 years old with a response rate of 71% showed that 61% were in favor of donation and only 18% are opposed. The study also showed that 31% of those surveyed had signed a donor card and/or registered with the National donor register; of these 72% were in favor of donation and 22% were opposed. There are now some 40 licensed users of the register. They are affiliated with ten units engaged in the procurement of organs and tissues for transplantation and other medical purposes. The number of requests for information from the users have slowly increased to some 250/month. It is estimated that less than 20% of the inquiries concern potential organ donors whereas the rest concern tissue donors and donors for other medical purposes. In about 15% to 20% of the instances it is found that there is information on the potential donor in the register that corresponds to the proportion of persons in the register in relation to the total population. The users find the register easy to use which is considered to be useful when the option of donation is discussed with the next of kin. The control of the logging has shown that in general the rulings of Swedish Data Inspection board are adhered to. Every effort is made to make sure the register is a safe personal register. The
From the National Board of Health and Welfare, Stockholm, Sweden. Address reprint requests to H. Gabel, MD, PhD, National Board of Health and Welfare, Sweden, 5 106 30 Stockholm, Sweden.
0041-l 345l97l$l7.00 PII so041 -1345(97)01070-1
3677
GABEL AND REHNQVIST
3678 SUMMARY AND CONCLUSIONS The large number of individuals who have registered with
the National donor register indicates that the general public feels there is a need for such a register. It also indicates that the register is accepted by the general public, Considering that the Swedish transplant act is an opting out law it was to be expected that those objecting to donation would be overrepresented as compared to their representation in the general public. This was confirmed when the opinions of the first 300,000 to register was compared to a survey of attitudes made at the same time. According to the guidelines for the medical profession issued by the Board, the Register always has to be consulted in the case of a potential donor. The Register is frequently
consulted and found useful by the licensed procurement coordinators. The rulings of the Swedish Data inspection board are to be followed and any divergence will be noted and acted upon by the Board. The new legislation was proposed at a time when the number of cadaver donors was declining. The number of cadaver organ donors remains unchanged. It is concluded that it is for governments to decide on donor registers and for government agencies and professionals to design safe registries and to continuously supervise how they are used. The Swedish National Donor Register is safe and operational. REFERENCE 1. Sanner M: Ekartidningen
(in Swedish only). 94:2098, 1997
The Swedish National Donor Register H. Gabel and N. Rehnqvist
A
GOVERNMENT committee, appointed to review transplant legislation and to consider a National donor register, suggested that the disadvantages of a donor register seemed to outweigh the advantages. Nevertheless, government decided there should be a donor register for the individual as a safe way to make his stand on donation known. The National Board of Health and Welfare was commissioned by government to design and run such a National Donor Register which was to be operational by July 1, 1996 as the new law came into effect. Furthermore, the Board was commissioned to issue guidelines for the medical profession, design donor cards, and inform the general public about the new transplant act. This new law states that, in the absence of any information, the individual is presumed to be in favor of donation of organs and other biologic material. The relatives have the option to veto donation. The transplant act (presumed consent, opting out) became effective July 1, 1996. The Board was to motivate the individual to take a stand on donation and to make that stand known in one or more of three ways: by informing relatives, by signing a donor card, or by notifying the donor register.
METHODS On the basis of information from foreign operational registries, after an analysis of critical points, and after consultations with the Data Inspection Board, the donor register was designed. It is a mainframe national donor register linked with the national population register where current addresses are stored. Everyone residing in Sweden having a Swedish lo-digit registration number can register. There are three options: yes to donation for transplantation and other medical purposes, for transplantation only, and no to any donation. Those who accept donation can make exceptions for organs/tissues they do not want to donate. Only signed applications arc accepted. Forms, together with basic information on the Transplant act were distributed as a household drop. In addition, information is available in pharmacies and hospitals. Only a limited number of professionals engaged in the procurement of cadaver organs and tissues are licensed to have access to the register via a PC and a modem. They may ask for information on deceased persons only. Requests on dying patients are not allowed. Data are available around the clock. There is a continuous logging of all requests for information to make sure there are no unauthorized entries or requests for information on persons alive.
0 1997 by Elsevier Science Inc. 655 Avenue of the Americas,
New York, NY 10010
Transplantation
29, 3677-3678
Proceedings,
(1997)
RESULTS
number of registrations exceeded all estimates made in advance. During the first three months, there were 1.1 million notifications. As of June, 1997, there are still some 2000 every month. There are >1,400,000 individuals, 15% of the Swedish population, in the register. We analyzed the notifications of the first 300,000 persons to the register, to make sure the register was used both by those in favor of donation as well as by those opposed; 52% were opposed and 48% in favor. Among the young there was a majority (66%) in favor of donation; 66% of those between 18 and 29 were positive to donation while only 29% of those older than 70 years old were positive. It should be pointed out that the registration is not a survey of attitudes. A mail survey’ performed in August of 1996 of 1,500 persons 18 to 70 years old with a response rate of 71% showed that 61% were in favor of donation and only 18% are opposed. The study also showed that 31% of those surveyed had signed a donor card and/or registered with the National donor register; of these 72% were in favor of donation and 22% were opposed. There are now some 40 licensed users of the register. They are affiliated with ten units engaged in the procurement of organs and tissues for transplantation and other medical purposes. The number of requests for information from the users have slowly increased to some 250/month. It is estimated that less than 20% of the inquiries concern potential organ donors whereas the rest concern tissue donors and donors for other medical purposes. In about 15% to 20% of the instances it is found that there is information on the potential donor in the register that corresponds to the proportion of persons in the register in relation to the total population. The users find the register easy to use which is considered to be useful when the option of donation is discussed with the next of kin. The control of the logging has shown that in general the rulings of Swedish Data Inspection board are adhered to. Every effort is made to make sure the register is a safe personal register. The
From the National Board of Health and Welfare, Stockholm, Sweden. Address reprint requests to H. Gabel, MD, PhD, National Board of Health and Welfare, Sweden, 5 106 30 Stockholm, Sweden.
0041-l 345l97l$l7.00 PII so041 -1345(97)01070-1
3677
GABEL AND REHNQVIST
3678 SUMMARY AND CONCLUSIONS The large number of individuals who have registered with
the National donor register indicates that the general public feels there is a need for such a register. It also indicates that the register is accepted by the general public, Considering that the Swedish transplant act is an opting out law it was to be expected that those objecting to donation would be overrepresented as compared to their representation in the general public. This was confirmed when the opinions of the first 300,000 to register was compared to a survey of attitudes made at the same time. According to the guidelines for the medical profession issued by the Board, the Register always has to be consulted in the case of a potential donor. The Register is frequently
consulted and found useful by the licensed procurement coordinators. The rulings of the Swedish Data inspection board are to be followed and any divergence will be noted and acted upon by the Board. The new legislation was proposed at a time when the number of cadaver donors was declining. The number of cadaver organ donors remains unchanged. It is concluded that it is for governments to decide on donor registers and for government agencies and professionals to design safe registries and to continuously supervise how they are used. The Swedish National Donor Register is safe and operational. REFERENCE 1. Sanner M: Ekartidningen
(in Swedish only). 94:2098, 1997