August 2002

Anonymity of sperm and egg donors has been the subject of increasing debate over recent years. The Department of Health have sought the views of the public and professionals as to whether, and to what extent, information about people who have donated sperm, eggs or embryos should be given to children born as the result of those donations.1,2

The response of the British Fertility Society (BFS) to this consultation is now published in the current edition of the Society’s journal Human Fertility3. Copies of this response are available by email from this office.4

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Dr John Mills, Chairman of the British Fertility Society said: “The BFS welcomes the Donor Information Consultation and timely debate on this complex, sensitive and very important matter. The Society has a multidisciplinary membership of doctors, nurses, scientists and counsellors and while there are areas of general consensus there is also some disagreement particularly over the question of donor anonymity. The BFS view is to avoid a position that is resistant to change and to adopt a progressive and informed approach”

Background

Assisted conception treatment involving the use of donated gametes (eggs and sperm ) is regulated by the Human Fertilisation & Embryology Authority under the Human Fertilisation & Embryology Act (1990). The use of donated sperm was well established before 1990 but procedures using donated eggs have only been possible more recently through the use IVF techniques. The question of what information should be given to offspring born as a result of gamete donation, particularly whether donors should be identified, has long been debated, not least during the parliamentary passage of the HFE Act.

Reflecting the recommendations of the Warnock Report of 1984, the conclusion of Parliament at the time of the passage of the HFE Act was that donors should remain anonymous but that all adults should have the right to find out whether they were born following gamete or embryo donation. However, anticipating that attitudes might change over time, the HFE Act enables the making of Regulations to amend the categories of information to be made available. The Government is now considering whether these are necessary and consulting widely on the options for change.

The full text of the consultation questions and the BFS response is published in the August issue of Human Fertility
Summary of the BFS response and recommendations:

There is little reliable evidence on anonymity and the problems experienced in other countries are open to many interpretations. There are genuine concerns about recruiting new donors if anonymity is relaxed, but open programmes that are being established in other countries should not be overlooked.

The BFS highlights in its recommendations (see recommendations below) the concern for donors and donor offspring. The need for information to be available to the donor offspring is recognised, but this should not compromise donor anonymity. At present the Society does not support a radical lift on anonymity, but believes that future legislation on identifiable donors could be changed in line with countries where identifiable donors are being recruited.

The BFS recommends that if anonymity is lifted then it is important for both donor and recipient to be fully prepared through provision of information, advice, support and counselling. This could be continued through a Voluntary Contact Register whereby future donors and recipients receive advice, support, information and counselling. Past donors should also be encouraged to join this.

Recommendations:

The BFS:

  • Recommends the making of regulations to allow the information to be available under section 31 of the HFE Act
  • Recommends that the regulations allow for non-identifying information. The range of information should meet the needs of donor offspring whilst ensuring that it does not jeopardise the anonymity of donors during any time that they are given anonymity
  • Recommends that a framework be set up to provide recipients and donors with information and support. Mechanisms should also be in place to acquire information to guide future developments.
  • Recommends that procedures are established to ensure that the data on donors are collected in a uniform manner across all clinics. This should included systems that encourage and assist donors in providing relevant information – questionnaires/proforma, written guidance and counselling.
  • Does not believe that the time is yet right for a radical change to lift anonymity in a universal manner as, in the Society’s view, the majority of donors and recipients are not ready for such a change. However, the Society believes that, in future, policy and legislations on identifiable donors could be changed in line with a number of countries where identifiable donors are being recruited.
  • Generally supports a new framework under which donors could choose to be either anonymous or identifiable. This is a proposal that generates concerns for some members of the Society. It is acknowledged that it introduces the potential for conflict within families, as some offspring may consider that their rights have been infringed by a decision made by their parents and donor excluding them from information that was available to other donor offspring. However, it could encourage an environment that allows donors and patients to move to a more open position in time. The imposition of mandatory non-anonymous donors could be reconsidered after a specified period when more relevant information has been collected and published.
  • Generally supports the concept that we move towards a policy of openness about donor anonymity in due course, and recommends a proactive approach in preparing both donors and recipients for this, through the provision of information, advice, support and counselling.
  • Recommends that a Voluntary Contact Register be set up. It will be essential that all future donors and recipients receive advice, information and counselling in relation to this. It will also be important that:
  • Publicity is given to the existence and role of this Register to encourage past donors to consider registering.
  • Arrangements are established allowing donors to up-date the information on the Register when appropriate.
  • A research infrastructure is linked with this Register to obtain information under the following subjects:
  • Current and changing attitudes amongst donors, recipients and others implicated in the processes of gamete donation.
  • The experience of other counties where restrictions are established or
    changed.

Notes to editors:

1. Department of Health Donor Information Consultation: http://www.doh.gov.uk/gametedonors

2. Human Fertilisation & Embryology Authority: http://www.hfea.gov.uk/

3. Human Fertility is also published on behalf of the Association of Clinical Embryologists, the Royal College of Nurses Group and the British Infertility Counselling Association.