Access to Information

Introduction

A move from secrecy and anonymity to openness and disclosure
has been seen in donor conception.

Family - Talking
Donor conception has been celebrated because it enables people to have children that might not otherwise have been able to. It has also been critised due to the ethical, legal and social issues it raises. In the past, secrecy surrounded the practice due to religious, moral and social views concerning infertility and the use of third party sperm. Legal uncertainties (for example about inheritance and legal parentage) also concerned people. Anonymity of the donor was also emphasized. 1

However, over time laws have been passed to clarify rights and responsibilities of parents and donors, and the legal status of children. ART has become more widespread, and accepted.

There has also been growing recognition around the world, that children are entitled to know about the method of their conception, and to have access to information about their sperm, egg or embryo donor(s). Interest in information about genetically related siblings is also recognised.

Many parents also wish to have information so that they can fully inform the child about their conception and genetic heritage, and to be aware of health and other family traits of the donor(s) to enable informed decisions as their child grows.

Donors also may wonder about the children that have been born, or wish to pass on relevant information to the families (eg. about health conditions).

A number of countries, states and territories, including Australia have therefore passed laws that prohibit anonymous donations, and provide access to information for those involved in donor-conception.

Below you will find an overview of those places that provide for access to information and who may gain information. More detail is then found on the Health Law Central pages regarding access to information in Australia, and around the globe.

Laws at a glance

A number of countries have legislation that enables donor conceived people to access information about their donor. The following tables summarise such laws. The first table focuses on Australia; the second – countries around the world.

Each table notes the jurisdiction (country/state), name of the relevant legislation, date of implementation (relevant to who may access information), and whether access was from the date of the Act forward (i.e. prospective), or relates to all donor conceived people regardless of the date of the legislation (i.e. ‘retrospective’). Whether information release is via a register or is clinic based is also noted.

More information about the law is then found below and via links on this page.

Table: Summary of Laws in Countries/States that Provide Access to Information (in date order)
Australia:*
Jurisdiction Legislation Date of implementation Access
Victoria (Australia)  1. Infertility (Medical Procedures) Act 1984;

2. Infertility Treatment Act 1995; InfertilityTreatment Regulations 1997;

3. Assisted Reproductive Treatment Act 2008

1. 1985 (with consent);

2. 1998;

3. 2010 (new act maintained status quo); amended 2015

Prospective from 1998; retrospective with consent for those conceived pre-1998

(register based)

From 17 March 2017, full retrospective release for all.

Western Australia Human Reproductive Technology Act 1991 (WA) 2004 Prospective(register based)
New South Wales (Australia) Assisted Reproductive Technology Act 2007 1 January 2010 Prospective (register based)

(retrospective with consent for non-identifying information from 2016)

South Australia Assisted Reproductive Treatment Act 1988 (SA); Assisted Reproductive Treatment Regulations 2010 (SA). 1 July 2010 Prospective (clinic based)
* Note Australian NHMRC Guidelines have recognised since 2005 that donor-conceived children have an entitlement to information. See further discussion below and on linked pages.
Countries around the world: 
Jurisdiction Legislation Date of implementation Access
Sweden Lag om insemination (Law on Insemination) 1984 (replaced by Genetic Integrity Act 2006) 18 March 1985 Prospective(hospital/clinic based)
Austria Fortpflanzungsmedizingesetz. 275 Bundesgesetz 1 July 1992 Prospective(clinic based)
Switzerland Federal Act on Medically Assisted Procreation of 18 December 1998 – FF 1996 III, 197 (LPMA) 1 January 2001 Retrospective(register based post 2001; clinic based pre-2001)
The Netherlands Wet donorgegevens kunstmatige bevruchting, 2002 1 June 2004 Retrospective w/ consent(register based)
Norway Act on Biotechnology 2003 1 January 2005 Prospective(clinic based)
United Kingdom Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004 (and Human Fertilisation and Embryology Act 2008) 1 April 2005 Prospecitve(but donors that donated 1991-2005 can ‘re-register’ to consent to release)

(register based)

New Zealand Human Assisted Reproductive Technology (HART) Act 2004 22 August 2005 Prospective(register based)
Finland Act on Assisted Fertility Treatments (1237/2006) 1 September 2007 Prospective(register based)

Information for all Donor-Conceived People?

Information - Question Mark made of People
The table above shows that most laws operate ‘prospectively’ – that is, from the date they were enacted. This means only children born after that date will have access to information.

A number of countries however, have introduced laws that make it possible (although not certain) 2 for all donor conceived people to access information regardless of when they were conceived.

In Switzerland, laws passed in 2001 set up a register of donor information for all future children. The law also included provision for children born before that date that clinics must release identifying information about donors to donor-conceived people upon request.

The Netherlands introduced legislaion in 2004 allowing for access to information for all donor conceived people conceived after that date. All donors that donated prior to that date were also asked to consent to release of information. If the donor consented, people conceived prior to the law are also able to have information about their donor.

Laws and practices introduced in the United Kingdom in around 2005 to release information, also allow for people who donated between 1991-2005 to ‘re-register’ so as to give their consent to release of identifying information.

More recently, in 2016 in Australia, the state of Victoria passed laws that will give donor conceived people the right to access identifying information regardless of when a donor donated or when they were born. The laws will come into force on 17 March 2017.

Click on the buttons below for more information about  Australian laws and guidelines or laws in other countries that release information.

Access to Information – Australia
Access to Information – Global

Find out more about donor conception

Notes:

  1. For detailed discussion of the history surrounding secrecy and anonymity, see Sonia Allan, ‘Donor Conception, Secrecy, and the Search for Information’ 19(4) Journal of Law and Medicine (June 2012).
  2. Retrospective access to information depends on files still existing; a ‘consent’ by donor approach means no access will be available if the donor says that he or she does not wish to share information