Human Fertilisation and Embryology Bill

1. Following the publication of your report on the Human Fertilisation and Embryology Bill on 18 March 2008, this letter sets out the Government's response to your conclusions and recommendations. We continue to believe that the proposals in the Bill are compatible with the Convention.

Background

In so far as these provisions [the extension of legal parenthood to same sex couples and the availability of parental orders to unmarried and same sex couples] reduce the risk of discrimination in relation to fertility treatment, we agree with the Government that the provisions in the Bill which extend parental rights in relation to same sex couples and unmarried couples are human rights enhancing measures. (Paragraph 4.5)

2. The Government welcomes this comment by the Committee. Parliament has passed legislation allowing the legal recognition of civil partnerships and to prevent discrimination on the grounds of sex and sexual orientation. In line with this wider policy, the Bill provides for civil partners and same sex female couples to be the legal parents of children born through assisted conception, including being recorded on the birth register as a parent. We are of the view that enabling same sex couples to both have the status of legal parents will also safeguard the welfare of any child born to them by ensuring they have a recognised legal relationship with both parents, rather than only one.

Access to donor information

In light of the weight being placed by the Government on the effect that a lower threshold for access to identifying information may have on potential donors, we call on the Minister to provide further information about the evidence base for its view that providing identifying information to 16 year olds or to Gillick-competent children would deter potential donors and undermine fertility services. We recommend that the advice of the National Gamete Donation Trust on this issue is published to allow parliamentarians and others to scrutinise effectively the Government's view. (Paragraph 4.14)

3. With regard to the age at which donor-conceived people can access identifying information about their donors, the Committee is seeking further information about the Government's view that providing such information to 16 year old donor-conceived people, or to those under 16 who are Gillick competent, would deter donors. In considering our policy on this issue, we sought the views of the National Gamete Donation Trust (NGDT), and we understand they have written to you directly with their views so that you may be aware of their concerns.

4. There is, in our view, a general perception that the two years between 16 and 18 years of age are important ones in the process of becoming more mature. Following the removal of anonymity, donors have to consider how they would feel if a donor-conceived person decided to approach them. It is our view, which is drawn from discussions with the NGDT, that many donors would have concerns about the prospect of contact from a 16 year old, to the extent that those concerns would outweigh their willingness to donate.

The "need for a father"

Without justification, such distinctions may be in breach of the right to respect for private life without discrimination (as protected by Article 8 and Article 14 ECHR). Similarly, the Convention prohibits unjustified discrimination between married and unmarried parents for the purposes of recognition of parental responsibility, or wider family law decisions on access and custody. (Paragraph 4.16)

Since it may reduce the risk that there could be unjustified discrimination against single mothers, or those in a same-sex relationship, in the provision of fertility treatment, we consider that the removal of the gender specific reference to the "need for a father" is a human rights enhancing measure. (Paragraph 4.17)

We welcome the requirement in the Bill that the HFEA Code of Practice provides guidance on the meaning of "supportive parenting".

Appropriate guidance must be issued by the HFEA to help providers of fertility services understand the extent of their obligation to consider the welfare of any child and to ensure that the need to consider 'supportive parenting' is not applied by providers of fertility services in a way which still carries a risk of unjustified discrimination against same sex couples and single women. (Paragraph 4.19)

5. The Government welcomes the Committee's view that the removal of the phrase the "need for a father" is a human rights enhancing measure. Following much detailed debate during the passage of the Bill through the House of Lords, the Government brought forward an amendment to replace the reference to a child's "need for a father" with a reference to their "need for supportive parenting". We believe that the term "supportive parenting" does not discriminate against either same sex couples, unmarried heterosexual couples or single women and instead values the role of all parents.

6. We will draw the Committee's recommendation to the HFEA's attention to take into account when drawing up their guidance. The Government indicated during debates on the Bill that we envisage supportive parenting would involve demonstrating a person would be willing and able to make a long-term commitment to safeguard and promote the child's health, development and welfare in a manner appropriate to the age and development of the child, to provide direction and guidance.

Safeguards for personal information

The Bill should be amended to make clear on its face that where the information to be disclosed engages Article 8 the test of necessity must be met. We recommend that all references to the power to disclose personal information, or enable the disclosure of personal information, as and when it is "expedient" are removed. (Paragraph 4.25)

7. We recognise the Committee's concerns about the safeguards for disclosure of personal information. However, I believe that there are real safeguards in place, and accepting this recommendation could unnecessarily fetter the HFEA's ability to disclose information where Article 8 of the Convention is not in play.

8. As was outlined during debate in the House of Lords, the authorisation process allowed for in new section 33C is intended to provide a method of last resort. It cannot be used by researchers to circumvent the need to seek patients' consent, where it is reasonably practicable to consult them. New section 33C(5) requires that the regulations may not enable or require identifying information to be disclosed or processed for any purpose, if it would be reasonably practicable to achieve the purpose by other means. Further to this, the issue of necessity will need to be approached rigorously on a case-by-case basis.

9. In relation to new section 8D(2), the provision is intended only to lift any duty of confidence. It does not provide for information to be disclosed once the duty of confidence is lifted. It is still necessary to comply with other legal obligations such as the Data Protection Act or Article 8 of the Convention where that Act or Article is relevant. It would therefore be unclear to refer to Article 8 and personal information in section 8D(2).

Contracting out by the HFEA

We do not share the Government's confidence that the Bill will ensure that the individual will retain a remedy against the HFEA for any breaches of Convention rights which are a result of the action or inaction of a contractor. In any event, we disagree with the Government's assertion that contracting out in these circumstances will not undermine the protection offered to third parties by the Human Rights Act. As we have consistently pointed out in our reports on this subject, a remedy against a commissioning public authority offers significantly less protection to a service user than the direct application of the HRA to a service provider. Without the direct application of the HRA, there will be no incentive to service providers exercising contracted out functions to take a positive approach to the rights of their service users. (Paragraph 4.28)

10. The Government has considered this matter and remains of the view, as set out in the letter to the Committee dated 14 December 2007, that there are appropriate safeguards in place in the Bill to ensure that individuals retain a remedy against any breaches of the Convention rights. Section 8C(5) of the Bill ensures that the HFEA retains responsibility for contracted-out functions. The HFEA, as a public body, has a legal duty to comply with section 6 of the Human Rights Act 1998. They will meet this duty for example by ensuring that contracts include the necessary safeguards in respect of confidentiality, with appropriate sanctions for any breach. Whatever terms are included in the contract, they will not remove the liability for any breach of confidentiality, which will, under the legislation, continue to rest with the HFEA itself. We are satisfied that these arrangements provide the proper protection of Convention rights in respect of personal information.

11. As regards the confidentiality of any information held by contractors, there are of course safeguards in place other than human rights legislation. There are further provisions in the Bill itself that ensure the protection of confidential information, as well as protection under the terms of the Data Protection Act.

Donor conception and birth certificates

We share the Government's concern that proposals to amend the process of birth registration raise serious concerns about the privacy of donor-conceived people. Conflicting views have been raised over the value of the proposals, including whether a change would lead to more people becoming aware of their status and whether or not a change would be welcomed by donor-conceived people. We note that the Government have made a commitment to keep this issue under review. The Government plans to consult with relevant stakeholders on whether a full public consultation should go ahead in 2008-09. We consider that the registration process should only be changed if there is objective evidence that it is necessary and that the change will not have a disproportionate impact on the ability of donor-conceived people to keep their birth status private if they wish to do so. (Paragraph 4.33)

12. During debates in the House of Lords, the Government committed to carrying out a review, within 4 years of commencement of the Bill, into whether birth certificates should be annotated in some way, or to find the best way to ensure that donor-conceived children are told about their origins.

13. We share the Committee's view that the registration system should only be changed if there is objective evidence that it is deemed necessary. We welcome that the Committee also highlighted that no change should have a disproportionate effect on donor-conceived people keeping their birth status private if they wish to do so.

Other issues raised by the Bill

We accept that in principle, the requirement for consent to the use of genetic material for these purposes is not absolute and that in some limited circumstances proceeding without consent may be justified. (Paragraph 4.38)

Any amendments proposed by the Government and containing safeguards for the protection of human rights should be published at an early stage to allow for effective scrutiny. (Paragraph 4.39)

Where the Government provides a further explanation of its views on the human rights compatibility of provisions in a Bill, it would assist effective scrutiny if this explanation were included in the Explanatory Notes which accompany the Bill when it passes from the first to second House. (Paragraph 4.40)

14. The Government undertook to give further consideration to a number of important issues raised in the House of Lords, including issues around consent, and is in the process of doing so. We will write separately to the Committee on any Government amendments that significantly alter the policy of the Bill, or the Bill's human rights compatibility.