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Questions and answers regarding the national organ donor register
1.
What is the National Organ Donor Register?

The National Organ Donor Register is an up-to-date solution to the organ donor card. It is a secure database containing information on the decision whether a person consents or does not consent to an organ and/or tissue donation. There is also the option of choosing a specific person of trust to make the decision for you.

2.
What is entered in the register?

In the National Organ Donor Register you can record your decision for or against organ and/or tissue donation. You have the following concrete options:

  • Yes to the removal of all organs and tissue
  • Yes to selected organs and tissue
  • No to the removal of organs and tissue
  • You choose a specific person to make the decision for you

You also specify whether you would like to release or not release non-transplantable organs and tissue for approved research purposes (only for research purposes approved by an ethics committee). See also: What does it mean to release your organs for research?

3.
Why should I join the National Organ Donor Register?

Joining the National Organ Donor Register will give you and your next of kin the peace of mind that your organs and tissue will only be donated if you have given your consent. Entering «Yes» means you consent to an organ and/or tissue donation, while entering «No» means that no organs or tissue will be removed. By joining the register, you will relieve your next of kin and the medical professionals of the burden of having to make this decision. Moreover, you will have peace of mind, knowing your wishes will be honoured. Your entry in the register clearly outlines your wishes. Ultimately, it is about honouring your decision as to whether your organs and tissue may be removed or not.

4.
We already have the organ donor card. Why do we now need the register, too?

The National Organ Donor Register is an up-to-date solution to the previously deployed organ donor card. Your decision is no longer recorded on paper but in a secure database. Experience has shown that the organ donor card can be lost or prove impossible to locate in an emergency. Your entry in the National Organ Donor Register is recorded centrally. In an emergency, the competent medical professionals in the hospital can ask Swisstransplant to check the register (see also: How does the register work in the event of a death?).

Questions and answers about your decision in the organ donor register
1.
Which organs and tissues can be donated?

The following organs can be donated: heart, lungs, liver, kidneys, pancreas and small intestine. The following tissue can be donated: cornea, ossicles, bones, heart valves, blood vessels and skin. Besides organs and tissue, you can also donate pancreatic islets. Find out more here.

2.
Can I change my decision?

You can change your decision at any time (once your entry has been validated). Use your login details to access the register and change your entry.

3.
How does the register work in the event of death?

In the event of death in hospital and if the patient is a potential donor, the competent medical professional calls Swisstransplant and asks whether the person concerned has a register entry. If there is an entry, the Swisstransplant coordinators then send the hospital the data sheet with the recorded and signed decision. This data sheet is given to and discussed with the next of kin or person of trust in hospital.

4.
What does it mean to release your organs for research?

If you have opted for an organ and/or tissue donation, it could be that not all organs or tissue can be transplanted. Medical investigations may reveal for instance an insufficient organ function that was not discovered during your lifetime. The organs that are unsuitable for transplantation may be released for research purposes. In the National Organ Donor Register you can, therefore, record whether all or only individual organs and tissue, which cannot be transplanted, may be used for approved research purposes or whether you do not wish this. Research involving deceased persons is governed by the Federal Act on Research involving Human Beings (Human Research Act [HRA] Article 36 et seqq.). Organs, tissue and cells may only be removed if the deceased person has given his/her consent. If no documented consent or refusal by the deceased person is available, organs and tissue may only then be removed for research purposes if the next of kin or a person of trust designated by the deceased person during his/her lifetime gives his/her consent. Furthermore, studies involving organs and tissue from deceased persons must be approved by an ethics committee.

5.
Who will help me when I have problems?

We are happy to help. Please give us a call on +41 58 123 80 00 (during office hours) or send an e-mail to registerswisstransplant.ch.

6.
Who can record his/her decision in the register?

Everyone who is resident in Switzerland and Liechtenstein (and cross-border commuters) over the age of 16. You need a valid
e-mail address.

7.
Can I record my children’s decision in the register?

Every person from age 16 upwards can enter his/her decision in the National Organ Donor Register or fill out a donor card. If the question of an organ donation arises in the event of a death while in hospital, the child’s legal representatives decide.

8.
Can I share an account with my partner?

No. Each individual must record his/her decision in his/her own entry.

9.
What should I do if I do not have an e-mail address?

You must have an e-mail address to record your entry in the National Organ Donor Register. You can obtain an e-mail address free-of-charge from many providers. The other option is to obtain a donor card in paper form and carry it with you. In either case it is important to talk about your decision with your next of kin.

10.
Who can access my data?

During your lifetime no one other than you can access your data. The National Organ Donor Register is a web-based database that meets the highest quality and security standards. Your data in the register are stored in a secure data centre in Switzerland. Swisstransplant has contractually agreed appropriate measures to maintain data privacy and data security. No data from the register are published or disclosed to third parties. In the event of imminent death, i.e. in the case of a terminal diagnosis and after a decision to cease treatment, the attending medical professionals can have the register checked to establish whether the patient has an entry. Swisstransplant National Transplant Coordination carries out the checks. If there is an entry in the register, the hospital that requested the check is sent a printout of the signed data sheet. In addition to the original signature, this data sheet also indicates the decision of the registered person. This data sheet is given to and discussed with the next of kin or person of trust at the hospital.

Questions and answers about alternatives
1.
Is the organ donor card still valid?

Yes, it is. Experience does, however, show that this document is rarely locatable. When the question of an organ or tissue donation arises, the card is often missing. In around half of the discussions with next of kin they are not familiar with their deceased family member’s wish. A register, therefore, offers more peace of mind, as the deceased person’s decision can be checked in an emergency.

2.
After recording my entry will I be given an organ donor card?

After validation of your entry, you will be sent a confirmation e-mail that your data and your personal decision have been stored in the central database. But you will not receive any confirmation in the shape of a physical organ donor card. In an emergency, the attending medical professionals will contact Swisstransplant National Transplant Coordination, who will check your personal decision in the National Organ Door Register.

3.
Should I continue to carry my organ donor card with me?

In principle, your entry in the National Organ Donor Register is sufficient as your decision is stored centrally and in an emergency it can be checked by Swisstransplant National Transplant Coordination. But if you prefer, you can continue to carry your organ donor card with you. What is important is that the decision indicated on the donor card is the same as in the register.

4.
Is the advance directive still valid?

The advance directive can still be completed and is valid. Every kind of manifestation of intent will be dealt with in the discussion with the next of kin. In the case of contradictory manifestations of intent, the most recent manifestation of intent is the one that will be considered valid. In the case of persons who are incapable of judgement, the decision will be taken by the responsible persons (parents or guardians), as before.

5.
Can I continue to use the Medical-ID app?

The Medical-ID app is still available for the time being. Experience does, however, show that an entry in this app – just like the donor card – is often impossible to find. When the question about an organ or tissue donation arises, in around half of the discussions with next of kin they are not familiar with the deceased family member’s wish. A register, therefore, offers more peace of mind, as the deceased person’s decision can be checked in an emergency.

Other questions and answers
1.
What is the connection between the Swisstransplant register and the register of the federal popular initiative?

The Swisstransplant National Organ Donor Register was developed separately from the federal popular initiative «Promoting organ donation – saving lives». The National Organ Donor Register is a database in which consent to or refusal of organ and/or tissue donation is recorded. The JCI federal popular initiative “Promoting organ donation – saving lives” seeks to bring about a constitutional amendment to the opt-out solution, i.e. everyone would in principle become an organ donor unless he/she has explicitly said no. The register that is being discussed by the federal popular initiative would be a register that everyone who refuses organ and tissue donation would join.