Access to Donor Information Around the World

Introduction

The importance of donor-conceived people having access to donor information, and to information about biologically related siblings, has been recognised in a number of countries around the world. Donors and recipients may also seek information in some countries. Below you will find information on countries that have legislation and court decisions about access to information. 1

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Countries with Legislation

Argentinian Flag

Argentina

Argentina introduced new laws on the 1st of October 2014 that provide for the ‘right to information of those born by assisted reproduction’. 2

Information regarding the person born by the use of assisted human reproduction with gametes of a third party must be included in the corresponding base file to birth registration.

People born as a result of donor conception may access medical information from the clinic, and may apply to the judiciary for access to identifying information if there is reason to do so.

Access to donor information flag australia

Australia

Anonymous donation is no longer permitted in Australia.

All states and territories are guided by the National Health and Medical Research Council Ethical Guidelines on Assisted Reproduction for Clinical Practice and Research (2007).

Four states have legislation governing access to information.

See the Health Law Central ‘Access to Information‘ main page for further information on Australian states and territories.

austria flag

Austria

Relevant Legislation

Fortpflanzungsmedizingesetz BGBI. Nr. 275/1992

Operation

The law requires that clinics/hospitals record the following information about a donor of sperm (note egg donation is prohibited in Austria):

  • First and last name, possibly even family names, and place of birth, nationality and place of residence;
  • First and last names of his parents;
  • Date of donation;
  • the results of medical investigations carried out at the time as per current medical knowledge to ensure mother and child are not at risk;
  • whether there are other families who have used the donor’s sperm

The law stipulates that a donor conceived person, upon request, after having reached the 14th year of life, may inspect the records of the clinic that hold the above information.

Earlier inspection may occur in medically justified cases subject to court authorization.

The donor is not considered the father of the child – the father is the person that the mother says – if she is married it is the husband, and in a defacto couple, it depends on who she names. Both go to the notary – representative of the state – and sign a contract that they take all responsibilities and duties for the child. This contract cannot be changed. If they later divorce, the husband cannot say that he is not the father.

Where is information held/accessed?

Information is held by clinics/hospitals. Requests for information are therefore made through the clinic/hospital, which may have its own requirements and procedures (such as counselling).

All of the contracts signed by the recipient parents are also kept forever at the state office, so if the child wants to know where the treatment took place they can go there and find out.

How long are records kept?

They are kept closed in a safe for at least 30 years, and then they have to be given to the health ministry of the state.

Government oversight.

Clinics report each year on how many cases of IVF have been conducted and the result tothe Health Ministry.

The statistics refer to IVF generally and not donor conception statistics.

Numbers for donor insemination in Austria are reportedly small.

Croatian Flag

Croatia

Relevant law

ZAKON O MEDICINSKI POMOGNUTOJ OPLODNJI (Law on Medically Assisted Reproduction, 12 July 2012) (Croatia), No: 71-05-03 / 1-12-2, Article 1.

Provisions

The law provides for recording of information about donors of gametes and embryos and its release to donor-conceived people. That is, a person conceived and born with the help of medically assisted conception using donated sperm or egg or embryos, has the right to have access to ‘all information about their biological origins, including identifying information about the donor(s).’

Information about donors of gametes and embryos in Croatia is held on the National Register of Medically Assisted Reproduction of the ministry responsible for health.

Notification of Donor-Conceived Status

Parents are obliged under law in Croatia to inform the person conceived and born with the help of medically assisted conception using donated sperm, ova, or embryos, the nature of their conception  no later than the age of 18.

finland flag access to donor information

Finland

Relevant Legislation

The Act on Assisted Fertility Treatments (1237/2006) (Finland) (which came into force on 1 September 2007).

Operation

The regulatory system in Finland comprises a regulatory authority—the National Supervisory Authority for Welfare and Health (Valvira)—that maintains the donation register ‘Louteri’ for donated gametes and embryos.

A child born as a result of gamete or embryo donation may consult the register at age 18 to learn the donor’s identity.

Reasons for giving access to information included:

  • considered a breach of a person’s right to privacy to allow third party (eg. government or clinic) access to information that directly pertains to the donor conceived person while continuing to deny the donor conceived person access;
  • the legal rights of people born as a result of donations come first, above donors and above recipient parents;
  • the Finnish Constitutional Law Committee of Parliament argued that the right to personal identity came within the scope of the right to privacy guaranteed under the Finnish Constitution. This includes the right to obtain information about ones origins;
  • the doctrine regarding the interests of the child overpowers every other interest and consideration. To be consistent with this doctrine and Finland’s being a State party to international agreements, including the UN Convention on the Rights of the Child, it was necessary to allow for information access.

What information is recorded?

In Finland section 17 of the Assisted Fertility Treatments Act provides prior to a donor donating gametes a consent document must be completed. This document shall contain the following information:

  • The donor’s identification code;
  • Confirmation of performance of physical examination;
  • Confirmation of receipt of counselling;
  • Conditions imposed on use of gametes (if any);
  • Consent to the gametes being used in assisted reproduction treatment;
  • Consent to confirmation of paternity (noting that in Finland the donor may consent to be recognized as the legal father – a provision usually used in known donor situations where parties wish to co-parent the child);
  • Period of consent;
  • Date and signature of donor providing service with consent.

Section 18 provides that the service provider collecting the donation shall ‘without delay’ notify the donation register of the donor code, identification data and whether the donation consisted of sperm, eggs, or embryos; as well as whether consent to paternity has been given. No data other than this is recorded on the Louteri register.

If the clinic does not provide the register with the above information they are committing an ‘offence of violation of child identity’ which may be subject to a fine or one year’s imprisonment.

Practice: There are 25 clinics in Finland, however not all use donated gametes. In 2010 an electronic system was implemented, so immediately after donation the clinic is required to send information about the donor to the register.

What information will be released:

a) to donor conceived people: Section 23 of the Act provides that a person who may have been born from a donated gamete or embryo shall, upon attaining the age of eighteen (18) be entitled to obtain from the service provider a copy of the consent to treatment and the donor code. The donor conceived person may then provide the donation register with the code to learn the identity of the donor.

It is expected that when a donor conceived person makes an application to the register they will be given the donor’s name and social security code. This will assist the donor conceived person to trace the donor if they wish to.

b) to recipient parents: Recipient parents do not receive information about donor characteristics. It is an offence to release information collected in regard to the physical examination. The Act further prohibits influencing the characteristics of the child to be borne via gamete or embryo selection and this is interpreted as a prohibition on providing information about external features or other characteristics of the donor to the clients seeking treatment. Recipient parents are not given identifying information about the donor unless the donor has consented to be recognized as the legal ‘father’ of the child.

c) to the donor: A donor may be informed of whether any children have been born as a result of using his or her gametes.

Donor numbers
In Finland, the number of donor conceived treatments has increased by 20% within two years, over the number of treatments than before the law was passed.

Ireland

Relevant Legislation

Children and Family Relationships Act 2015 Act No. 9 of 2015

Operation

All information about the child, recipient parent(s), and donor are to be entered into the ‘National Donor Conceived Register’.

What information will be released:

To the donor-conceived person

Non-identifying information will be released to a donor-conceived person over the age of 18 years, or to their parent, if they are under 18 years of age.

Identifying information may also be released when the donor conceived person reaches 18, however a donor can object to such release if they have sufficient reasons. The Minister will evaluate the objection, and if information is withheld, written reasons must be provided.

To the donor

A donor-conceived person can give consent at any time the age of 18 to the release of information about them if they wish to do so voluntarily.

A donor may request from the Minister the name, date of birth and contact details of a donor-conceived child who has attained the age of 18 years and in relation to whom he or she is a relevant donor. If the donor-conceived person has not already consent, they will be notified of the request. Unless the donor-conceived person refuses, information will be released within 12 weeks.

To Siblings

A donor-conceived person who has attained the age of 18 years may request the Minister to record on the Register a statement of his or her name, date of birth and contact details and confirming that he or she consents to the release of information to a sibling. As per the process for donors described above, the release of information is then reliant upon a request being made. When such a request is made, the donor-conceived person about whom it relates will be notified, and information will be released within 12 weeks unless the donor-conceived person refuses.

Requirement for Counselling

All donors, recipient parents, and donor-conceived children must receive counselling on the implications of his or her recording information upon the register or, as the case may be, receiving such information. This must happen prior to any such information being recorded or released. 

Notification of Donor-Conceived Status (Interaction of the register with register of births)

Ireland includes notification on the register of births that a person is donor conceived. When an entry is made upon the National Donor Conceived Register, the Minister must also notify the tArd-Chláraitheoir (The Registrar General) that they hold a record in the Register in respect of the child concerned. An tArd-Chláraitheoir must then note in the entry in the register of births that the child is donor-conceived and that additional information is available from the Register in relation to that child.

Netherlands

Relevant Legislation

Wet donorgegevens kunstmatige bevruchting, 2002.

The law came into force in June 2004.

Operation

Offspring conceived by semen or oocyte donation have the right of access to information identifying their donor once they turn 16.

Access to information by donor conceived people however depends upon when they were conceived.

Significant dates are pre- or post- 2004 (when the law above came into force).

Since 1 June 2004 donors may only donate if they have no objection to the registration of their data or the possibility the information will be released to any offspring.

Donors who donated prior to 2004 were asked to consent to the release of information, but were still given the choice to remain anonymous.

Where is information held?

There exists a the central government register for information and a separate DNA databank/support system (currently run by FIOM/ISS). The two systems are linked and work in unison to achieve information release and support for all people that make an inquiry.

The Government Register (The Foundation for Donor Information)

The Foundation for Donor Information is part of the Ministry of Health, Welfare and Sport. It records all information regarding donor conception in the Netherlands, and manages the data in terms of information release.

Since 2004, when a doctor performs a treatment with donor sperm, donor egg or donor embryo, they are required to report all details concerning the donor to the register. Women who have undergone treatment are required to report back to the clinic when there has been a live birth. If they do not it is assumed that there has been.

The register is digital and information can be entered directly from any computer with the internet. Anybody wishing to enter information needs a ‘token’ (which is a form of safety identification to enter the site). Clinics therefore can input information themselves, noting they can only see information that they have filled in themselves. The register can see all the information.

a) Information held on the register

Identifying information:

First Name, Last Name, Address, D.O.B. (This is confidential up until age 16)

Non-identifying information:

Medical Blood type Genetic information
Physical Height Weight
Colour of hair Colour of eyes Social Information
Age at time of donation Highest education Occupation
Marital status With whom the donor lives How many children
Sex of children Age of children Why he donated
Details about the donor (34 characteristics that the donor scores regarding personality/interests etc)

b) who can access information?

  • A doctor can ask for medical information
  • Parents can ask for physical and social information about donors until child is 12 years old
  • Donor conceived person can ask for physical and social information from age 12
  • From 16 identifying information also available to the donor conceived person.
  • Sibilings – formally the law is silent on sibling matches, however it has been the practice of the register to recognize when donor children share donors. Children will be asked if they would be interested in having contact with half siblings and they will be linked regardless of whether donor is an ‘identified’ or ‘non-identified’ donor.

c) the contact and consent approach for past donations

In the two years before the law became operational (between 2002-2004) clinics were asked (obliged) to contact all the donors that they had used in the past and ask them to sign a statement about whether they would agree to release of identifying information. If the donor said ‘No’ they were required to sign a ‘confidentiality statement’, which meant their information would not be released.

Whether or not clinics state there is a confidentiality agreement, all clinics are obliged to give all information they have about the donors to the register.

Note: In the Netherlands, the contact and consent approach for donations made prior to the introduction of the law was (and continues to be) seen by some as equivalent to an ‘information veto’. It has been seen by some as leaving a ‘loop-hole’ that may be used to thwart the underpinning values of the Act, which are to release information to, and support, donor conceived people. 3

FIOM – The DNA Register and Intermediary Services

People searching for information that were conceived prior to the relevant dates have turned to the DNA register provided by FIOM – a national social work agency whose primary role is to assist with decision making regarding abortion, adoption, and donor conception. It provides counselling and support services for questions that have a deep impact on human life.

FIOM operates the DNA register (originally established by The Foundation Donor Child) which is premised upon everyone entering on a voluntary basis (which was seen to bypass any of the issues related to privacy). The DNA register is linked to a hospital lab that does DNA testing and meets the highest standard in the Netherlands.

There are over 600 people on the database.

The provision of support and intermediary services occurs throughout the process.

The DNA Laboratory used by FIOM has collaboration with 19 hospitals throughout the country, so there are 19 different places that people can have their blood tested, and then the actual DNA analysis is done at the central hospital.

Donor Linking

Government funding to date has recognized the need for counselling and intermediary services. FIOM has acted as the central agency, and then may use other practitioners on a per needs basis (eg. due to location). This way there is a national agency that keeps high level expertise and then local level support that sometimes need to work with adoption/dc persons and that can call national agency.

Where there has been a DNA test

  1. the Codes go to FIOM and they then inform the local social worker (who is chosen based on proximity to donor).
  2. The social worker then first talks with the donor (with the view that donors should be assisted in feeling as much at ease as possible);
  3. The same social worker talks to the donor conceived person/people (separately);
  4. The social worker will establish how to exchange information, and also whether a meeting is desired and or possible between all parties;
  5. If the social worker establishes that a meeting is possible, then a meeting is proposed to all parties in local office or elsewhere;
  6. Once the first meeting occurs the parties may proceed with having direct contact, but there is always the possibility that they may go back to the social worker.

When people have been referred by the government register they may or may not undergo DNA testing, however the process from 2-6 is the same.

New Zealand

Relevant Legislation

The Human Assisted Reproductive Technology Act 2004 (New Zealand).

Operation

In New Zealand, the HART Act, established the Human Assisted Reproductive Technology Register which holds information about donors, donor offspring and guardians.

The register, which has been operational since 22 August 2005, is maintained by the office of Births, Deaths and Marriages within the Department of Internal Affairs which has the responsibility for establishing and maintaining the Register.

Information about sperm, egg and embryo donors, donor offspring and their guardians is held the register. Access to information held on the register is restricted. Generally only the people named on the register can access the information, or the guardians of offspring under the age of 18.

Mandatory inclusion of information

In New Zealand, only those donations made on or after 22 August 2005 that result in a birth are automatically included on the register. Information to be held on the register includes the donor’s name, address and date and place of birth; the offspring’s name, gender and date and place of birth; and the guardian’s name and address. After 50 years (or if the clinic goes out of business), fertility clinics will give Births, Deaths and Marriages more detailed information about the donor and offspring including family history and cultural affiliations.

Voluntary inclusion of information

People who donated sperm, eggs or embryos before  22 August 2005, and people who were born as a result of those donations (and their guardians) can however voluntarily provide information about themselves for inclusion on the register. For such donations, donors and offspring (or the guardians of offspring under 18) can provide their personal details as well as information relating to their physical attributes, medical history, ethnicity and cultural affiliation.

Access to information

Donor offspring can access information at age 18 in New Zealand, however a donor offspring who is 16 or 17 years of age can apply to the Family Court to be treated as though he or she is 18 years of age for the purposes of providing information for inclusion on the register, or for applying to access identifying information about a donor, or related donor offspring who share the same donor. A Family Court Judge will only give approval if he or she is satisfied that it is in the best interests of the donor offspring to have access to the information, or to provide information for inclusion on the register.

Updating Information

Information held by Births, Deaths and Marriages and the fertility clinics can be updated by a donor, donor offspring or the guardian of a donor offspring at any time using the appropriate registration form. In some instances, Births, Deaths and Marriages will use other registered information about a person (e.g. If there is a change of name registered) to update the HART Register.

For further information see information provided by the New Zealand Department of Internal Affairs here.

Norway

Relevant Legislation

Act on Biotechnology 2003 (with effect from from January 2005)

Operation

  • 2-7. The child’s right to information on the sperm donor

Any person who is born as a result of medically assisted reproduction using donated sperm has a right to information on the sperm donor’s identity at the age of 18. A donor register shall assist the child in this matter.

  • 2-8. Donor register

The Ministry shall establish a register for registration of the identity of sperm donors, so that children can exercise their rights pursuant to section 2-7.

A register so far has not been established. However the Norwegian Biotechnology Advisory Board has suggested that it is time for the government to act. Donor conceived people will be able to seek information from 2021.

Sweden

Relevant Legislation

Lag om insemination (Law on Insemination) 1984 (enacted 1985), replaced by Genetic Integrity Act 2006

Operation

The law in Sweden does not set up a system of data registry or release. Instead Chapter 7 of the Genetic Integrity Act 2006 simply provides:

Section 6: For fertilisation outside the body a doctor shall select egg or sperm from a suitable donor. Eggs or sperm from a donor who is deceased may not be used for fertilisation. Data concerning the donor shall be recorded in a special journal. This shall be retained for at least 70 years.

Section 7: A person conceived through fertilisation outside the body using a donor egg or sperm has the right to access the data on the donor recorded in the hospital’s special journal, if he or she has reached sufficient maturity. If a person has reason to assume that he or she was conceived through such fertilisation, the social welfare committee is obliged, on request, to help this person find out if there are any data recorded in a special journal.

‘Sufficiently mature’ is not defined in the text of the Act. However, in formal instructions from the National Board of Health and Welfare 1987, where the application of the law was clarified, the age is specified as ‘the upper teens’.

The use of donor gametes can only be performed at a University hospital. There are less than ten University hospitals in Sweden and so there are only that many special journals.

Note in Sweden:

  • a recipient parent can only use a donated egg OR donated sperm (not both) because in Sweden you cannot ‘adopt an embryo’;
  • the donor remains anonymous to recipient parent(s).

Access to information for people conceived prior to the 1985 law

If donor conceived people were born before the laws banning anonymity in 1985, they could possibly obtain information through their mother’s journal (although note above point about donors remaining anonymous to recipient parents so this might prove difficult).

Telling a child of their donor conceived status

There is no mechanism to alert a child to his/her donor conceived status, however, the Board of Health Regulations says that the parents should be informed and supported in how they should let their child know.

A study conducted in 2006 by Lalos et. al in Sweden found that more than half of parents interviewed (61%) had told their child(ren) about the method of conception. Almost all parents had told someone else. Most parents told their children early (at approximately 5 years of age for the first child), and did so to ‘avoid accidental discovery’, due to a ‘desire for openness’, and based on a ‘person’s fundamental right to know his/her genetic origin’. 4 Some parents however, did not tell their children because they considered donor insemination a private matter or they were afraid of other people’s attitudes. The study also found that healthcare staff had impacted on the parents’ thinking – a majority of those who had been encouraged to tell their child(ren) had done so.

Despite the number of parents telling children, the study concluded that ‘there was a discrepancy between the intentions of the legislation and how parents act in relation to them.’ They suggested that to improve compliance, ‘it is crucial to organize education, support and ethical discussion among professionals, and to offer parents, and parents-to-be, counselling, support and group sessions with other DI families.’

Switzerland

Relevant Legislation

Federal Act on Medically Assisted Procreation of 18 December 1998 – FF 1996 III, 197 (LPMA)

Operation

Art. 18: Before donating the sperm donor must be informed in writing of the child’s right to obtain information.

Art 24. Information recorded about the donor includes family name and first name, date and place of birth, place of residence, place of origin in Switzerland or nationality, occupation and education; date of the sperm donation; results of the medical examination; and information about physical appearance.

Art. 27: Once the child has reached 18 years of age, he or she may request information from the Federal Office about the donor’s physical appearance and personal data. In addition, the child may at any time request information on all the data relating to the donor if he or she has a legitimate interest in obtaining it. Before the Federal Office discloses personal data, it shall inform the donor if possible. If the donor does not wish to have personal contact, then the child must be informed and made aware of the donor’s rights of privacy and his family’s entitlement to protection. If the child insists on his or her right to obtain information, the information shall be provided.

Art 41 provides for retrospective application of the Act. It states ‘Articles 18 and 24–27 also apply if sperm cells have been donated before, but are only used after, the commencement of this Act.’ It further creates a requirement that ‘in all other cases, physicians who have used assisted reproductive techniques using donated reproductive cells must provide information, with the provisions of Article 27 applying mutatis mutandis [meaning with only the necessary changes being made].’

Practice

Note: In practice although Art 41 requires clinics to release information to donor conceived people conceived or born prior to 2001, this has proven difficult. Many clinics reportedly destroyed their records under a law that only required to keep them for 10 years. People conceived after 2001 will be able to access information in 2019.

United Kingdom

Relevant Legislation

Human Fertilisation and Embryology Act 1990 (UK) and the Human Fertilisation and Embryology Act 2008 (UK).

Operation

Access to information in the United Kingdom by donor conceived people depends upon when they were conceived – pre or post 1991 (which marked the commencement of the Human Fertilisation and Embryology Act) and subsequent to 2005 after which anonymous donations may no longer take place.

The primary locations that may assist donor conceived people seeking information about their donor (or siblings) are

  • the Human Fertilisation and Embryology Authority (HFEA),
  • The UK Donor Conceived Register, or
  • clinics.

Rules Around Releasing Donor Information – for post 1991 conceptions

The Human Fertilisation and Embryology Authority has kept records of all births that have resulted following assisted reproductive treatments in all licensed UK fertility clinics since its inception—that is, 1 August 1991.

The estimated number of donations (by the HFEA) is currently 800-1000 donors per year, with a higher number of female donors (65%) than male donors (35%).

a) Information available about donors:

For people conceived between 1 August 1991 – 1 April 2005

The HFEA collected the following information about donors:

  • their physical description (height, weight, eye and hair colour)
  • the year and country of their birth
  • their ethnicity
  • whether they had any children at the time of donation
  • any additional information the donor choose to supply such as occupation, religion, interests and a brief self-description.

People conceived using a donor between 1991 and 2005 may access this non-identifying information when they turn 16 (noting however that not every donor provided all of this information and that the HFEA advises ‘relevant counselling’ prior to making an inquiry so that information seekers are able to cope with finding less information than they desire).

Some people conceived between these dates may also be able to access ‘identifying information’ (i.e. a name and address) of the donor at age 18. This depends upon the donor having ‘re-registered’ with the HFEA as identifiable. To date approximately 100 donors have done so – without any public campaign to encourage them.

For people conceived after 1 April 2005

The information collected by the HFEA regarding donors after 1 April 2005 is more extensive and includes identifying information. When donor conceived people conceived after 1 April 2005 reach the age of 16 they will be able to access the following information about their donor:

  1. physical description (height, weight, eye and hair colour) if provided by the donor
  2. the year and country of birth
  3. ethnicity
  4. whether the donor had any children, how many and their gender
  5. marital status
  6. medical history
  7. a goodwill message to any potential children, (if provided)

When the donor conceived person reaches the age of 18 they will also be able to obtain identifying information (the donor’s name, date of birth and last known address).

NB. There was a ‘window’ between 1 April 2005 and 1 April 2006 where anonymous donor gametes that was stored could still be used. In addition, people may store anonymous donor gametes for up to 10 years to conceive a genetically related sibling for a child already born. People conceived using these ‘anonymous’ gametes, even if post 2005, do not have similar access to identifying information.

b) Information available about genetically related siblings

Donor conceived people are also entitled to anonymous information about any donor-conceived genetically related siblings they may have from age 16. This excludes information about the donor’s own legal/natural children.

This information consists of:

  • year of birth
  • details on the number of donor-conceived siblings you have
  • the sex of your siblings.

From 18 years of age donor conceived people may find out identifying information about any donor-conceived genetic siblings, if both sides consent. The information includes contact details and information on how that person would like to be contacted, rather than biographical information.

A voluntary donor sibling registry has also been established by the HFEA. From 2010, when donor-conceived people reach the age of 18, they have been able to place their contact details on a voluntary sibling contact register called Donor Sibling Link, administered by the HFEA. The HFEA states that they will facilitate the exchange of contact details between siblings who consent to be on this register. Consequently, it will be possible for donor-conceived adults to trace their siblings, on the basis of mutual consent, through the voluntary sibling contact register. It is not possible for parents to trace their child’s siblings through the voluntary contact sibling register.

Two people who intend to get married may contact the HFEA register and inquire whether they are genetically related.

c) Information available to recipient parents

Parents are granted a discretionary right of access to information by the authority.

Only information which could not, on its own or in conjunction with any other information, be used to trace or identify the donor will be given.

Depending on what information has been provided, parents may get some or all of the following:

  • a physical description of the donor (height, weight, eye and hair colour)
  • the year and country of the donor’s birth
  • the donor’s ethnicity
  • whether the donor had any children at time of donation, how many and their gender
  • the donor’s marital status
  • the donor’s medical history
  • a goodwill message from the donor to any potential children

The UK Donor Conceived Register – Pre 1991 conceptions  (A voluntary register)

For people conceived prior to 1991 there was no central repository of donor information. They can however attempt to seek information about, and contact with, their donor or donor sibling(s) through a voluntary organization, the UK Donor Conceived Register (formerly known as UK DonorLink).

The former UK DonorLink was the world’s first DNA-based voluntary register service for donor conceived adults, having opened in 2004.

The now UK Donor Conceived Register is available to people throughout the UK and is intended for anyone who donated in a UK clinic or was conceived following treatment in a UK clinic before August 1991. However because of storage and distribution practices it is possible that donor-conceived born until December 1992 could find donor-conceived half-siblings or their donor on the register.

A link to the UK Donor Conceived Register can be found here: http://www.donorconceivedregister.org.uk/

Obtaining information through Clinics

For those conceived pre-1991 there also exists the option of contacting the treating clinic to ask them to provide non-identifying information. However, this has not proved particularly fruitful: many clinics have closed down, and/or destroyed their records.

Washington State, United States

Relevant Legislation

Operation

The US state of Washington, since July 2011 has recognised the rights of donor-conceived people to have access to information about their donors.

Gamete donors must provide identifying information about themselves and their medical history when donating gametes.

Donor-conceived children may contact the clinic that provided the gametes, when they reach 18 years of age, to request identifying information about their donor and their donor’s medical history.

The donor can however veto disclosure to prevent the clinic from revealing his or her identifying information. If this occurs, the donor offspring will still be entitled to the anonymised medical history.

Washington is the first US state to take such a step.

Court Judgments regarding the release of information

Germany

In 1989, Germany’s Constitutional Court decided that individuals should have the right to know their genetic identity. A further ruling on tissue donation in 2007 declared that files on specific donations must be held for 30 years.

However donor conceived people have found it difficult to obtain information.

On 6 February 2013, the Higher Regional Court in Hamm, Germany, granted a 21-year-old donor-conceived woman the right to access the identity of her donor.

The Court ruled that the interest of the plaintiff in ascertaining her parentage is assessed to be higher than the interests of the defense and the right to a nondisclosure of donor information. Further, it was held that an agreement between a clinic and parents to maintain the anonymity of a sperm donor was an illegal contract as it was to the detriment of the offspring.

The Federal Association of Reproductive Medical Centers described the decision as improving the legal position not only for children of sperm donors, but also of doctors. Because physicians would be obliged the share the information, the court decided, they could not be held culpable for breaking doctor-patient confidentiality by doing so.

Then, on 28 January, 2015, the German Supreme Court (Bundesgerichtshof) on 28 January 2015, further held that all children have a right of access information, regardless of age, and that that rights trumps any right the donor has to privacy. 5

The 2015 Supreme Court decision concerned two sisters, aged 12 and 17, who were both fathered from donor sperm. The sisters had appealed to the Supreme Court after a reproductive clinic refused to provide the biological father’s identity, as the girls’ legal parents had initially waived the sisters’ right to know who the donor was. The Supreme Court however upheld their right to know his or her heritage derived from Articles 2(1), 1(1) of the German Constitution, which was held to found the right to a claim for information between two private individuals if a civil claim exists between the parties. The German Civil Code § 242 was here seen as important as it established such a civil claim regarding the contract entered into by the parents and the doctor, which constituted a third-party beneficiary contract for the benefit of the child. This contract could be the basis of the right of the child to know the donor’s identity. 6

The judges saw no foundation in existing laws to support an age requirement, arguing that it had to be assumed that a child could have a desire to know his or her parents independent of his or her age, and that naturally such a desire does not only emerge when a child turns 16.

It further determined that ‘the right of the sperm donor to informational self-determination, i.e. deciding himself which details about his private life to disclose to the wider public, based on Articles 2(1), 1(1) of the German Constitution, was trumped by the right of the child to know his or her heritage’. This was particularly so as the donor had willingly participated in the procreation of the child and had to accept a certain social and ethical responsibility towards the child.

The right of the child to know his or her heritage was seen by the Court as also trumping the right of the doctor not to disclose information about his patients as part of his or her professional freedom derived from Article 12(1) of the German Constitution.

Legislative reform called for

Dr Petra Thorn, a German academic who specialises in this area, notes that the rights of people conceived between 1997 and 2007 are unclear. 7

In addition, there exists barriers to encouraging people to disclose their children’s status, or to share information. For example, in Germany there exists a right to contest paternity granted to donor-conceived people living with heterosexual parents during the two years following disclosure. Calls for such laws to be abolished have been made, emphasising that while offspring are interested in and curious about the sperm donor, they do not wish the donor to be granted legal parenthood. (NB. the German legal system does not provide the possibility to contest maternity after egg donation).

Sperm donors currently may also be held to legal paternity if their sperm is used for same-sex couples not in civil relationship and where, as a consequence, the social mother cannot adopt the child. They may also be considered the legal father when donating to single women.

A comprehensive legal framework for release of information is still lacking. Calls for a  central register collecting all data about donor insemination, and reform of the law to address the above issues have been made. 8

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Notes:

  1. Note: Much of the information presented on this page is based on research conducted by Dr. Sonia Allan in 2012 during a Churchill Fellowship in which she visited numerous countries that release information to donor conceived people to find out about laws and practice. Sonia Allan, A Cross-Jurisdictional Study of Regulatory Requirements and Practice Regarding the Recording of Donor Information and its Release to Donor Conceived People 2012 Report prepared for the Winston Churchill Memorial Trust. Available at http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2160627. As new laws have been passed, or decisions handed down, the list has been updated – noting that by all indications, the list may grow into the future.
  2. Código civil y comercial de la nación, Article 563.
  3. Sonia Allan, above note 1.
  4. Hum. Reprod. (2007) 22 (6):1759-1768.
  5. BGH, Urteil vom 28. Januar 2015 – XII ZR 201/13.
  6. This interpretation is based upon English summary of judgment by Child’s Rights International, at at https://www.crin.org/en/library/legal-database/supreme-court-germany-decision-xii-zr-201/13, accessed 19 August 2015.
  7. Petra Thorn, ‘Court decision in Germany supports rights of the donor conceived to access their donor’s identity’, in BioNews, 18 February 2013 at http://www.bionews.org.uk/page_257189.asp.
  8. Petra Thorn, above note 7.