Select Committee on Science and Technology Written Evidence


APPENDIX 47

Memorandum from the Donor Conception Network

  1.  The Donor Conception Network was founded in 1993 as a self-help network of parents of families conceived through donated gametes, adult offspring, and those contemplating or undergoing treatment. We have over 800 member families throughout the UK and some overseas. We include those who are still coming to a decision about whether donated gamete treatment would be right for them; those undergoing treatment which has not yet been successful; those who already have children but have not yet found it possible to tell their children or families but intend to do so; and those who have children and wish to be in contact with other such families. Our members include married and unmarried couples, single women, lesbian couples, parents who have been separated, divorced or widowed—and individual adults who are donor offspring. The majority of the membership comprises families who have been or are being treated with donor sperm insemination; a growing number with donated eggs or embryos.

  2.  Our philosophy is clear. We believe that high quality relationships in families are best promoted through honesty and openness, and that the secrecy that used to surround donor treatment is no longer appropriate. It is of fundamental importance that those conceived in this way should be told—preferably as early as possible in their lives. We produce a range of children's story books and other materials to help and support parents in explaining the facts.

  3.  We have also supported the ending of donor anonymity. Anonymous donation assumed children would never know. Long before Parliament sanctioned anonymous donation, doctors recruiting sperm donors offered them anonymity. They saw this as a simple contract between the donor and the potential parents where the doctor acted as broker. All parties would want secrecy because of the perceived stigma of infertility and the presumed desire of the donor for lack of legal/financial or other involvement. No one thought about the effect on or the rights of the people conceived because it was assumed they would never know the truth about their origins. Now that people conceived through donor treatment will in growing numbers know about their origins, either because their parents tell them or because they take advantage of their right to consult the HFEA register, the assumption underlying the offer to donors and parents of anonymity is no longer valid. We have a changed world—a world in which lying, deceit and secrets should have no part.

  4.  We are warmly supportive of the Health Minister Melanie Johnson's desire to change the culture of donor treatment and donor recruitment towards a more open and relaxed climate. Donors should be valued for what they do, giving the most significant personal charitable donation possible—that of their genetic material. They should be prepared to tell their family members, and their present and future children. Parents should find no inhibition in telling their donor conceived children about how they were brought into the world.

THE LAW AND THE REGULATORY FRAMEWORK

  5.  The HFE Act makes appropriate provision for the legal position of donors (exempting them from financial and parental responsibility) and establishing the parental rights of the family into which donor conceived children are born. This rightly depends on the treatment taking place in a UK licensed clinic, following the offer of counselling and the completion of relevant consent forms. A Register is to be maintained by the HFEA of donors, donor treatments, recipients and children born. Clinics in which treatment takes place and in which gametes are stored are to be inspected and licensed by the Authority.

  6.  The robustness of these provisions both in legal and practical effect is of vital importance to those involved in donor treatment and will be even more so following the ending of donor anonymity. A Register in which the live birth information is 100% accurate is vital.

  7.  The current legislative framework is deficient in a number of respects.

  8.  The scope of activities that are regulated only covers actual insemination or IVF, or the storage of gametes. Businesses, whether commercial or not for profit, that offer fresh sperm that is not "stored" are not within the scope of regulation. It is doubtful whether businesses that offer packages of treatment, some of which takes place in the UK and some elsewhere, are subject to regulation.

  9.  Donors appear to have no rights—just a relief from responsibilities. If the law is unclear, it should be clarified to ensure that they can be given information about whether children have resulted from their donation. Donors should also have the right to be informed if and when an offspring expresses a request for their donor's identity, rather than being contacted direct without warning.

  10.  The position of pre-1991 donors and donor conceived people and their treatment records should be clarified. It has taken a legal case [Joanna Rose v Health Secretary and HFEA] to test the legal rights of pre-1991 donor conceived people. In the pre HFE Act era donor treatments (nearly all donor insemination) were carried out in a variety of settings. No one however appears to have proper responsibility for pre-1991 donor treatment records. Most clinics that operated before 1991 became licensed by the HFEA, but others did not. There is nothing preventing the destruction of pre-1991 treatment records; it was noted in court that the records of the donor treatment that resulted in the birth of Joanna Rose had been destroyed. We believe it is important that all pre-1991 records be preserved.

  11.  Of the treatments and activities licensed by the HFEA, donor treatment is a minority concern. There are times when, in the eyes of clinicians, the media and regulators, other more exciting issues (IVF, ICSI, PGD, PGS, stem cell research, HLA tissue typing) can appear to swamp donor issues. Moreover it is of concern to us that the future of the HFEA's functions has been put in doubt by the Department of Health's review of Arm's Length Bodies. Donor issues would be diluted even more if the HFEA's functions were to be merged into a larger body with a wider remit.

  12.  Now that the question of donor anonymity has been settled by Parliament, the most important issue remaining is how to secure that donor conceived children are told the facts about how they were conceived. The HFE Act requires that women should not be treated unless account has been taken of "the welfare of the child". The HFEA is committed to undertaking a review of how this provision is applied in practice.

  13.  Our view is that the welfare of donor conceived children demands that only those who are clearly committed to telling their children should be offered donor treatment. Clearly it is impossible to monitor whether people who have agreed to tell do actually do so. But it is here relevant to contrast donor conception practice with that in the field of adoption. Proposed adopters are required to undertake to tell their children the facts about their adoption and are not accepted as adoptive parents unless this had been agreed to. The practice in fertility clinics, and the professional and regulatory guidance, should adopt this approach to safeguarding the welfare of children.

  14.  Assisted reproduction medical practitioners are not necessarily well equipped with knowledge about family welfare and child development, but what they say to patients can be very influential. Nor is it easy for those undergoing or contemplating treatment that, by definition, has yet to even produce a pregnancy, to project forward to the issues they need to consider about telling their potential child. While access to counselling is important, the role of counsellors is essentially non-directive.

  15.  The experience of the Donor Conception Network is that those contemplating donor treatment need access to independent information and support, and one of the most valuable sources is from families who have been through the process. The Network seeks to provide a range of services (helpline, contact lists, newsletters, meetings, website) to support families not just at the time when they are contemplating treatment, but throughout family life and also at later stages in the lives of donor conceived individuals.

23 June 2004





 
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