Donor sibling registry

A Donor sibling registry is a registry to facilitate donor conceived people, sperm donors and egg donors to establish contact with genetic kindreds. They are mostly used by donor conceived people to find genetic half-siblings from the same egg- or sperm donor.

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Types

There are registries of the fertility clinics etc. as well as independent registries.

Clinic

Fertility clinics etc. keep registries of donors and receivers. The donor number is generally available to the donor as well as the receivers. On the other hand, a donor doesn't generally know which receivers that are linked to his/her donor number, and the receivers don't generally know the true identity behind the donor number.

In the case of non-anonymous donors, the donor conceived people may know the true identity of the donor behind the donor number.

Independent

Since clinic registries are often very limited, independent registries may be more efficient in finding genetic kindreds.

Some donors are non-anonymous, but most are anonymous, i.e. the donor conceived person doesn't know the true identity of the donor. Still, he/she may get the donor number from the fertility clinic. If that donor had donated before, then other donor conceived people with the same donor number are thus genetic half-siblings. In short, donor sibling registries matches people who type in the same donor number.

Alternatively, if the donor number isn't available, then known donor characteristics, e.g. hair, eye and skin color may be used in matching siblings.

Donors may also register, and therefore, donor sibling registries may also match donors with their genetic children.

Clinic

The way of clinics to register sperm donors differs between countries. In addition, there are also international registries.

Australia

There is no national registry in Australia as health is handled by the individual states within Australia. However, some states have initiated donor registries. In the Australian state of Victoria, donors must register at a centralised register and agree to release identifying information to the donor child when they reach 18 years of age. Other states such as Western Australia have implemented a voluntary register which donors and recipients may register their details. This is not compulsory in any state other than Victoria.

New Zealand

In New Zealand the Human Assisted Reproductive Technology Act 2004 established the HART register which makes details of donors available to children and medical professionals.

Sweden

As in Austria, donor registration is a task for each region, in Sweden: county. Thus, any official fertility clinic cannot know if a donor has donated in other places within the country as well.

UK

In the United Kingdom, the HFEA has a central register of people of people conceived using gamete donation after 1st August 1991. People conceived using donations made after 1st April 2005 will have the right to know who their donor was when they turn 18.^[1] UK Donorlink is a voluntary register for people conceived before 1st August 1991 and for their donors.^[2]

Independent

Donor Sibling Registry

Main article: Donor Sibling Registry

There is only one "Donor Sibling Registry" (www.donorsiblingregistry.com), a trademarked, 501 c3 non profit organization in the United States. The Donor Sibling Registry is a very successful international web-based registry which has helped to facilitate more than 4,000 matches between people who share genetic ties—donor offspring, half-siblings, and donors—through the unique donor identity numbers assigned by the sperm banks to the donors. Meetings between donors and their offspring and between half-siblings have in general been extremely successful and are becoming increasingly common occurrences. There are more than 15,500 donors, donor offspring and parents registered worldwide on the Donor Sibling Registry.

Scandinavian Sibling Registry

However, a Scandinavian Sibling Registry is at the planning stage, in order to avail donor siblings to find each other. The price of membership in this new registry is a one-time payment, since there practically aren't any costs once registered.

Legislation

The Personal Data Act ^[3] regulates donor/sibling registries in Sweden. For instance, personal data may mostly not be handed out unless there is consent from that person, and this might include donor codes, although only the clinic itself can link it directly with that donor. However, they may still indirectly link to the donor, and therefore, it is not certain that clinics are willing to deliver donor codes. Furthermore, even if the organization is availed the data, then, by the same law, such an organization has huge responsibilities. For instance:

• It has to make sure the data only is used for its purpose, i.e. link donor siblings to each other.
• The people turning to the organization too has to give data to the organization, and therefore have to be properly informed about how it is used. In addition, a written consent has to be retrieved from them.

References