Abstract
This article discusses the legal routes by which donor-conceived children can gain access to information about their biological parents, and ways in which they could challenge the refusal to provide this information.
Introduction
As the law stands at present, the right of donor children to obtain information about their biological parentage and the type of information available depends entirely upon the date on which the donor donated the gametes.
The Human Fertilisation and Embryology Authority (HFEA) was created by the Human Fertilisation and Embryology Act of 1990. It has a duty to keep a register of information which records details of assisted reproductive services other than basic partner treatment services. 1 It also has a duty to provide donor children, on application, with as much information about their biological parents as it is required by Regulations to give. 2
In 2001 two donor-conceived children, Joanna Rose and an anonymous minor, approached the Secretary of Health requesting information about their biological parents. In response to this request the Government launched a consultation exercise. The two donor-conceived children issued a claim for judicial review, which was heard by Mr Justice Scott Baker in 2002. 3 Mr Justice Scott Baker held that Article 8 was engaged by donor children's quest for information about their biological parents. Many of the other issues in that case were stood over pending ministerial decisions. These ministerial decisions resulted in the passage of the 2004 Human Fertilisation and Embryology (Disclosure of Donor Information) Regulations, 4 which came into force on 31 March 2005. The Regulations set up a system for the disclosure of non-identifying information for children conceived after 1 August 1991, and brought donor secrecy to an end for children conceived from gametes donated after 31 March 2005.
31 March 2005–present
Children conceived from gametes donated after 31 March 2005 may, therefore, apply at the age of 18 years to find out identifying information (name, date of birth and last known address) about their donor. Parents cannot apply for identifying information on behalf of their children.
At the age of 16 years, or earlier by parental application, children conceived from gametes donated after 31 March 2005 can obtain the following non-identifying information on a request to HFEA
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: their physical description (height, weight, eye and hair colour) if provided; the year and country of their birth; their ethnicity; whether they had any children, how many and their gender; their marital status; their medical history; a goodwill message to any potential children, if provided.
Donor children can also receive non-identifying information about donor-conceived genetic siblings after they reach the age of 16 years, and, if both parties consent, identifying information after they reach the age of 18 years.
1 August 1991–31 March 2005
All children conceived in licensed clinics in the UK between 1 August 1991 and 31 March 2005 can obtain non-identifying information on a request to the HFEA. The non-identifying information which is available may include: a physical description of the donor (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.
Children conceived during this period can also obtain information about their donor-conceived siblings. Two persons who intend to enter an intimate physical relationship or marry can make a joint application to discover whether they are genetically related.
The 1990 Act clearly prohibits the disclosure of identifying information about the donor to donor offspring conceived before 31 March 2005. 6
Approximately 90 donors who made donations during this period have voluntarily decided to ‘re-register’ to provide identifying information. 5
Before 1 August 1991
Before the 1990 Act came into force on 1 August 1991, there was no regulatory regime in the UK which governed gamete donation. Donations were made at private clinics, where donors were routinely promised absolute confidentiality. 3 The HFEA states that it does not keep information about pre-August 1991 conceptions in the Register. Donor children conceived before 1991 therefore inherit a difficult situation where they are faced with practical and legal problems if they wish to discover any information at all about their biological parentage.
Voluntary contact register
From October 2009, there has been a statutory basis for a voluntary contact register for donor parents and children. 7 Prior to 1 October 2009 a voluntary contact register already existed, run by a not-for-profit organization called UK Donor Link, so it is unlikely that the new statutory provision will change much for donor offspring. To date, only 54 donors are registered with UK Donor Link, with another 28 who are in the process of registration. It is impossible to know what percentage of donors this amounts to, as there is no record of the overall number of donors before 1 August 1991. 8
Obtaining non-identifying information: children conceived before 1 August 1991
There is no legal provision that expressly prevents the release of non-identifying information to donor children conceived before 1 August 1991. The problems which donor children might encounter in obtaining non-identifying information are the practical difficulty of tracking down the information, and the problem of persuading clinics to disclose non-identifying information.
Making a subject access request under the Data Protection Act to a clinic will not be of assistance to children in this position, because data relating to the keeping or use of gametes is exempted from the Data Protection Act. 9 If a clinic is unwilling to provide non-identifying information to a donor child, it would be worth approaching the HFEA.
Although the HFEA states that it does not hold information about pre-1 August 1991 conceptions, it is required by statute to keep information which it has ‘obtained’ in the Register. 10 This requirement does not relate to any particular period of time. ‘Obtained’ is not defined in the 1990 Act or in the case law. It would, therefore, be possible to submit that if the HFEA had at any time obtained information relating to pre-August 1991 conceptions (for example, if it had intervened in a clinic in exercise of its regulatory functions), that information should be in the Register. Non-identifying information in the Register should be disclosed. 11
If that failed, it would also be possible to argue that the HFEA has the power to direct clinics to provide non-identifying information in order to prevent a breach of the child's Convention rights. The 1990 Act empowers the HFEA to give directions to a ‘particular person’ for any purpose under the Act. 12 ‘Particular person’ is not defined in the Act or case law. Submissions have been made that ‘particular person’ could therefore include clinics that have never been licensed as well as licence-holders. 3
The disclosure to donor children of non-identifying information relating to their conception engages Article 8 (private and family life). 3 Article 14 (non-discrimination) would also be likely to be engaged by this situation, as there would be a difference in treatment between children born before and after 1 August 1991.
If the HFEA did not take any action in relation to a request for non-identifying information, it would be possible for donor children to bring a claim for judicial review. The prospects of establishing a breach of Articles 8 and 14 seem good: there is no legal prohibition preventing the disclosure of non-identifying information, and the countervailing consideration of donor confidentiality would not apply.
Obtaining identifying information: children born from gametes donated before 31 March 2005
There is a clear conflict between the absolute confidentiality which was promised to donors before 31 March 2005 and the right of the children to know the identity of their biological parents. At present, the legal position is firmly in favour of donor confidentiality.
Donor children born from gametes donated before 31 March 2005 would face an uphill struggle in bringing a judicial review to challenge a refusal by the HFEA to provide identifying information about their biological parents. The issue was aired on an obiter basis in Rose. 3 (The decision in Rose concerned only non-identifying information.) Mr Justice Scott Baker observed that any failure to honour the longstanding understanding of perpetual donor confidentiality would be ‘manifestly unfair to the donors’ and would ‘drive a coach and horses through the AID system’. His remarks must now be read in the context of the change in the law to end donor confidentiality for donations after 31 March 2005.
Available remedies
It is probable that the Secretary of State does not have the power to make Regulations which would permit the disclosure of identifying information to any children born from gametes donated before 31 March 2005. The Secretary of State is prohibited by statute from making Regulations which require the HFEA to provide identifying information if a licence-holder was provided with the information at a time when the HFEA could not be required to give it. 13 Narrowly construed, this prohibition would only apply to post-August 1991 information (i.e. information provided after the licensing regime was created). However, even if the Secretary of State had the power to make Regulations which applied to pre-August 1991 information, the making of Regulations would require the positive approval of both Houses of Parliament. 3,14 Even if a breach of Convention rights could be established, any failure to make such Regulations would not be subject to the ‘negative resolution procedure’ 15 and would therefore not be unlawful by virtue of section 6 of the Human Rights Act. In either scenario, the only remedy available would be a declaration of incompatibility with respect to the whole scheme of the 1990 Act. 16 If that failed, the only way to proceed would be to make an application to the European Court of Human Rights.
Convention law
European jurisprudence has established a distinction between ‘positive obligation’ and ‘negative obligation’ cases. Cases involving requests for access to information about personal identity are likely to fall into the ‘positive obligation’ category, where the State is required to take action. 17 Some of the European case law suggests that there would be a lower justificatory burden on the State and less intense scrutiny of decisions in ‘positive obligation’ cases. 17 Elsewhere, however, the European Court has found that the applicable principles are similar: regard must be had to the balance which has to be struck between the competing interests, and in both contexts the State enjoys a certain margin of appreciation (the legitimate room for manoeuvre between States' different interpretations of Convention rights). 18
It is likely that Article 8 would be held to be engaged both by the donor child or children's desire to discover information about their personal identity and by the promise of confidentiality made to the donor. Wider rights-based considerations could also be taken into account, for example, the family life of the donor child's legal parents and siblings. In Odievre v France, 18 a case which concerned the right of an adopted child to access information about her personal history, the interests of the adoptive family were taken into account by the European Court.
The following submissions would be likely to be made in favour of the donor child: Although this is a case of competing Article 8 rights, donor children had no choice in the circumstances of their conception. The donor made a decision to be involved in this situation, and may have been aware that attitudes and law could change in relation to donation. Knowing the truth about their origins is crucial to a donor child's sense of identity; From the point of view of a donor child, it is arbitrary that children conceived from gametes donated after 31 March 2005 should be in a better position than children conceived from gametes donated before that date. The difference in treatment amounts to a breach of article 14; The prohibition on disclosure of identifying information is ‘blanket’ or absolute in nature, and allows no room for the circumstances of individual cases to be considered. By analogy, in Gaskin v UK
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a system for access to a child's care records was held only to be Article 8-compliant if there was recourse to an independent authority who could decide whether access should be granted if a contributor was not available or withheld consent; In the case of donor children conceived before 1 August 2001, the UK lacks any adequate system for reconciling the competing interests of donor children and donors;
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it is unclear whether and to what extent the HFEA has responsibility for decision-making. The UK's position on the issue falls outside its legitimate margin of appreciation.
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The margin of appreciation will be narrower because a particularly important facet of an individual's identity is at stake. Although this is a case of competing Article 8 rights, much weight should be given to the pre-existing relationship of confidentiality when undertaking the balancing exercise. This is the approach taken in cases of competing Article 8 and Article 10 rights,
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albeit in the different context of a weighing exercise which is made on a case-by-case basis. Contact with donor children has the potential to interfere with the donor's existing family life; Donor confidentiality provides an objective justification for the difference in treatment between the different groups of donor children. The question of whether the difference in treatment was justifiable under Article 14 would stand or fall with the question of whether the legislation struck a fair balance for the purposes of Article 8;
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The ‘blanket’ or absolute nature of the prohibition is Article 8-compliant. In Evans v UK
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an absolute prohibition on the use of frozen embryos where one partner's consent was withdrawn was held to be consistent with Article 8, as it promoted legal certainty and avoided arbitrariness in weighing incommensurable interests; The UK's position on the issue falls within its legitimate margin of appreciation. The margin of appreciation will be wider because the state is required to strike a balance between competing Convention rights, and because there is no consensus within the member states of the Council of Europe on this sensitive issue.
In favour of the Government position, the following submissions would be likely to be made:
If this matter were ever taken to the European Court, even if the legislation were held not to strike a fair balance, the matter would still have to fall outside the UK's legitimate margin of appreciation in order for the application to succeed. In establishing the width of the margin of appreciation, weight would be likely to be placed on the absence of European consensus.
Over time, the prospects of success would therefore be likely to increase as more European countries end anonymous donation and public opinion moves away from secrecy. At present there is little consensus: only seven European countries have brought in formal legislative provisions to end anonymous donation: Sweden, Austria, Switzerland, the Netherlands, Norway, the UK and Finland. 21 However, there seems to be a trend towards disclosure: all but two of these seven countries took the step to end anonymous donation after 2000. From the point of view of donor children wishing to access identifying information, even an unsuccessful challenge to the present law may have an influence on European public opinion.