Opening the Record Planning the Provision of Counselling to People applying for Information from the HFEA Register Report of the HFEA Register Counselling Project Steering Group January 2003 Foreword The origins of this report lie in the accumulated experience of many years of counselling people who are planning families conceived by gamete donation and the donors themselves. When the UK’s Human Fertilisation and Embryology Act (1990) gave legal recognition to the provision of this field of counselling it set a seal on work that the British Infertility Counselling Association (BICA) had been undertaking for some time but it also provided a much stronger foundation on which this fledgling service could grow. In those early years, the energy of BICA’s counsellors was directed at developing counselling in regulated clinics in order to reach high standards and reduce the disparities in provision between centres. In early 1990, the issues raised by the opening of the HFEA Register in 2008 were still at some remove. However, we are now approaching that time and it is essential for preparations to be made. Increasingly counsellors are responding to people’s desire to anticipate the needs of their growing children and it is these young people who are now coming sharply into focus. BICA’s task of providing guidance on the provision of counselling to those who apply to the Register was greatly facilitated by funding made available by the Department of Health and the Scottish Office. We were also very fortunate in being able to draw together a Steering Group whose combined expertise and enthusiasm has considerably benefited the process. In addition, it was enormously encouraging to find a wealth of expert advice and information being made readily available to us by a wide range of individuals and organisations in the UK and other countries. Yet, it was not an easy task. We have had to work with the fact that there is very little practice experience or research data on origins counselling specific to this field. It will be some years before we have the opportunity of hearing from the key stake-holders – the people who apply to the HFEA Register of information and others who are affected, on the extent to which we have hit or missed the mark in trying to plan for their needs. However, it is BICA’s view that there is a duty of care for all those affected by gamete donation. In particular, we believe that the welfare of donor offspring should be treated as paramount in relation to the provision of counselling in this area. We know that our Association can play its part in planning service provision and that clinics need more guidance in preparing people for this form of family building. We hope that the report will be widely read and promote discussion. Inevitably, the recommendations indicate the need for research. We would welcome any work that informs policy and makes a positive contribution to the life experience of people affected by gamete donation. Meanwhile, we present our recommendations as a guide to best practice within the limitations of current knowledge. Jennifer Hunt Chair, HFEA Register Counselling Project Members of the HFEA Register Counselling Project Steering Group Eric Blyth Julia Feast Jennifer Hunt Marilyn Lawrence* Olivia Montuschi Sheila Pike** Jennifer Speirs Amanda Turner Emma Watters * Unable to continue after the first 6 months due to work commitments. ** Joined the Steering Group from September 2002 Chairperson. Infertility Counsellor, University Hospital of Wales Parent of donor offspring, co-founder of Donor Conception Network Infertility Counsellor, Jessop Wing, Sheffield and Chairperson of BICA Infertility Counsellor and Origins Consultant, formerly Director of Family Care, Edinburgh Chartered psychologist/private practitioner; donor offspring Oocyte donor Professor of Social Work, University of Huddersfield Policy Research and Development Consultant, British Association for Adoption and Fostering Senior Infertility Counsellor, Hammersmith Hospital IVF Unit. Terms of Reference for the HFEA Register Counselling Steering Group To provide expert guidance and recommendations on the delivery of high quality counselling services to people who seek information from the HFEA Register. Acknowledgements The Steering Group has greatly appreciated the information and advice received from a wide range of individuals and organisations, both from within the UK and overseas, who have provided their expert evidence for the drafting of this report. The Department of Health played a key role in the feasibility of the project by providing core funding for our work. Further support was provided through a grant from the Scottish Executive and the Bruce Trust and practical assistance from the British Infertility Counselling Association. ©BICA Published by: First printed: Produced by: Designed and Printed by: ISBN: 1-901406-20-2 BICA Publications 2003 The British Infertility Counselling Association, Registered Charity No. 803743 Aspen Creative Resources Ltd (email: aspen.ltd@virgin.net) Contents Foreword Members of the HFEA Register Counselling Project Steering Group Terms of Reference for the HFEA Register Counselling Project Steering Group Acknowledgements Section 1 Section 2 Section 3 Section 4 Section 5 Section 6 Section 7 Introduction The regulation of assisted conception treatment Counselling for recipients and donors Counselling for adult donor offspring The Context Changing attitudes towards the provision of information The potential demand for information from the Register The Project Aims and objectives Method of working The relevance of adoption policy and practice The Counselling Needs of Adult Donor Offspring The personal impact of being conceived by donation The social and emotional implications of contacting the Register Expectations and requests The Counselling Needs of Relatives of Donor Offspring Parents of donor offspring Siblings Children of donor offspring Spouses/partners Extended family The Counselling Needs of Donors and their Families Children of donors Spouses and partners Extended family Known donation Counselling for Individuals Conceived Prior to 1990 and their Families 11 13 15 19 23 25 27 Section 8 Section 9 Section 10 Appendix 1 Appendix 2 Appendix 3 Appendix 4 Appendix 5 Appendix 6 Appendix 7 Staffing and Service Delivery Service organisation Staffing Record keeping Funding and location of counselling Publicity Further Recommendations Access to identifying information Counselling of recipients and donors Summary of Recommendations A Qualitative Study Looking at the Counselling Needs of People Seeking Information from the HFEA Register Suggested Policy and Procedures: Counselling and Information Services for Adult Donor Offspring Accessing Non-identifying Information from the HFEA Register Legislative and Counselling Provision in Victoria, Australia Protocols from Victoria, Australia Adoption and Access to Information Respondents to the Consultation Selected Bibliography 29 35 37 41 49 53 57 61 63 65 1. Introduction The Steering Group has explored the counselling requirements of people who seek information about their origins from the HFEA Register and sets out the evidence in this report. It also addresses the needs of others who may be affected by a person’s wish to make such enquires as well as the implications for donors, their families and those who were conceived prior to the establishment of the Register in 1991. The regulation of assisted conception treatment 1.1 The rapid advance of assisted conception techniques since the 1970s and public response to their potential for manipulating the early stages of human development have provided a continuingly high, international profile to this field of medical science. In the UK, public debate over the potential ethical, moral, social and legal implications for society has been considerable. A Committee of Inquiry into Human Fertilisation and Embryology was established in 1982, chaired by Baroness Mary Warnock, to seek evidence on what policies and safeguards should be applied. The majority of the Warnock Report’s recommendations on counselling were taken up and included in the subsequent Human Fertilisation and Embryology Act (1990). Under section 12, centres that provide licensed treatment must offer “a suitable opportunity to receive proper counselling” to those involved in the treatment process (recipients and donors). Section 31 makes the same provision for people applying to the HFEA Register of Information upon attaining the age of 18, or earlier if planning to marry. 1.2 The HF&E Act did not provide further directions about the delivery of counselling in either circumstance. The terms “suitable opportunities” and “proper counselling” left considerable scope for diverse interpretation. As a result, the Department of Health invited the King’s Fund Centre in 1990 to set up a multidisciplinary committee to make recommendations on the counselling needs relating to the provision of infertility services under the Act. Counselling for recipients and donors 1.3 The HFEA Code of Practice contains detailed guidance, based on the King’s Fund Centre’s recommendations, on the provision of counselling to people seeking treatment and to donors. During the past 10 years, this guidance has been instrumental in the considerable progress made towards raising the standard of counselling services in licensed treatment centres. Criteria for best practice include the type of counselling to be offered; the qualifications, training and supervision of counselling staff; areas to be addressed during implications counselling; the facilities available; monitoring and recording of the up-take of counselling. 1.4 In addition, subsequent work undertaken by the British Infertility Counselling Association (BICA) and the British Fertility Society (BFS) on the accreditation of infertility counsellors has recently been completed, resulting in the establishment of the Infertility Counselling Award. Successful acquisition of this Award should eventually become the recognised qualification for those providing counselling in assisted conception centres and also provide a benchmark of best practice for counselling in any setting related to infertility. 11 Counselling for adult donor offspring 1.5 The King’s Fund Committee made four recommendations relating to people who were born as a result of treatment and their families. These were that: • Counselling support should be available for parents who request guidance about relevant issues as • Children who wish to discuss issues associated with gamete or embryo donation should have access • The counselling of persons requesting information from the Authority about their genetic origins • Information to be made available to young persons born as a consequence of regulated treatment their child(ren) grow up. to an infertility counsellor. should be undertaken by a counsellor specialising in family relationships. should be kept under review by the Authority. 1.6 Since publication of the Report in 1991, no further work has been done in relation to the counselling provision for donor offspring and their families. In contrast to the detailed guidance given for the counselling of recipients and donors, the HFEA Code of Practice makes no reference to counselling donor offspring or their relatives, with the exception of a brief statement that “If someone who has previously been a donor or patient returns to the centre asking for further counselling, the centre should take all practicable steps to help them attain it.” Such a request is not stated as specific to parents seeking guidance in relation to donor offspring. 1.7 Furthermore, no Regulations have yet been made under section 31 of the Act. As a result, there is no guidance to licensed treatment centres on additional information that should be sought from gamete donors in order that this could be available to a person seeking information from the Register. Consequently, the information to be made available has not been kept under review or been subject to up-date in revisions of the Code of Practice. However, in December 2001 the Department of Health took the first step towards making such Regulations by the publication of a consultation document on providing information about sperm, egg and embryo donors. 1.8 BICA recognises that the outcome of the consultation will have considerable impact on the scope of counselling to be provided to applicants to the Register. However, awaiting this outcome would involve further delay in planning for the counselling that will be required. The importance of adequate preparation and guidance on counselling for recipients and donors had been recognised by the government in 1990 when it set up the King’s Fund Centre’s Committee. Similar work is needed to ensure that the counselling provided to people applying for information from the HFEA Register reflects their needs and is informed by the knowledge and expertise of others already providing origins counselling to donor offspring or in equivalent situations. Recommendation 1. The Steering Group recommends that arrangements for the counselling to be provided in relation to the HFEA Register be formally planned and set in place well in advance of the date when first applications may be made. 12 2. The Context Changing attitudes towards the provision of information 2.1 Opinions about the information that should be available to people conceived by gamete donation are very diverse. There are those who claim that there is not sufficient evidence to suggest that donor offspring wish to be informed about their origins or that they suffer from secrets being maintained and they argue that no information should be available. An opposing view is presented by others who argue that everyone has a right to know their full genetic and biographical identity, that donor offspring should have parity with adopted people in accessing the identity of their genetic parent(s) and that the current legislation is a form of discrimination against a minority group. 2.2 Our terms of reference did not include recommendations on what information should be made available but the Steering Group felt it appropriate to note the evidence that attitudes are changing over time. Nineteen years ago, the Warnock Committee advocated the maintenance of donor anonymity but acknowledged the possibility that donor offspring might suffer adverse psychological consequences if secrecy surrounded their conception. It suggested that more detailed descriptions of donors should become available but it recommended that this be limited to only basic information about the donor’s ethnic origin and genetic health. 2.3 The King’s Fund Centre Committee went further in identifying the “destructive potential of the tension caused by secrecy in the family”, noting that there is “a considerable body of research evidence and perceived practice wisdom derived from psychiatry, psychology and social work which demonstrates the importance of openness and honesty in family relationships”. The Committee’s recommendation that prospective parents need to consider the child’s need for information about his/her genetic origins was incorporated fully into the HFEA Code of Practice. Whilst counselling for recipients and donors remains non-directive on this issue, the process of exploring these needs implies a positive acceptance that openness is likely to be in the best interests of the child and the well being of the family. 2.4 The movement away from secrecy and anonymity has also been represented by the formation of two groups that campaign on behalf of donor offspring, advocating changes in policy and law in line with the field of adoption. The Donor Conception Network is particularly significant since it is a member organisation of parents of donor offspring, people who are donor offspring and donors. The Project Group on Assisted Reproduction (PROGAR) is a professional grouping with representatives from a wide range of organisations as well as donor offspring and parents of donor offspring. 2.5 In other countries, notably Sweden, Austria and some states in Australia, legislation and practice have endorsed the right of donor offspring to not only be informed of the nature of their conception but to the identity of the donor. In the UK, the addition of the Human Rights Act (1998) to our legislative framework has added a new dimension to the debate. Already, two donor offspring have won the first round of their action against the UK’s statutory enforcement of donor anonymity. They argued that this policy contravenes their right to ‘respect for private and family life’ guaranteed by Article 8 of the 1950 European Convention on Human Rights. The judge agreed that they had a case under the Human Rights Act. He fully acknowledged the desire 13 ‘picture of their identity’ and the relevance of ‘lessons learned from adoption’. He adjourned dealing with the substantive matter of whether their rights were breached pending the outcome of the DoH consultation. Recommendation 2. Changing attitudes towards donor anonymity should be acknowledged and taken into account in the planning of services related to the HFEA Register. The potential demand for information from the Register 2.6 Estimates of the number of donor offspring born since the HFEA Register was established vary. However, the HFEA annual reports show that there were 17,849 treatment cycles using sperm, egg or embryo donation between 1.8.91 and 31.3.99. HFEA records also indicate that there were 10,763 live births following donor insemination in that period and that births following gamete and embryo donation formed 31.8% of all live births from assisted conception. The likely number of applicants to the Register in any one year can only be guessed at. In gathering evidence for our report, views were expressed that the demand could be extremely high with the likelihood of many young people wishing to confirm their genetic status in their family and learn more about their biographical identity when the Register becomes accessible. 2.7 Should patterns follow those of adopted people, the timing of seeking information will vary considerably. A major life-event such as marriage, the birth of a child or the death of a parent might act as a trigger that initiates the search for information. There is, however, evidence that the wish for origins information is closely linked to the need to satisfy important concerns about personal identity. This opens the possibility for a considerable range of motivations and ages at which people will seek information. It suggests that the desire to approach the Register could occur at any point where an individual experiences uncertainty or curiosity about their genetic relationships. 2.8 The Department of Health consultation offers an opportunity to gauge the current range of views on the information that should be available and make Regulations that reflect current values. Whatever its outcome, the Steering Group was of the opinion that the trend towards openness will continue, so that secrecy within donor families will become less common. Young people growing up in full knowledge of their origins will be in a position to choose whether to consult the Register and there is likely to be a correlation between the developing culture of openness and the number of applications for information. Recommendation 3. Services for people affected by gamete donation should be capable of responding to an increasing demand. 14 3. The Project of donor offspring to learn about the ‘biological father’ or ‘mother’ and their need to establish a Aims and objectives 3.1 The project was set up with the aim of disseminating guidance about the management and delivery of counselling services to people seeking information from the HFEA Register. 3.2 The scope of the project was primarily bounded by the provisions of the Act. It was, however, clear to the Steering Group that the Register would have implications far beyond its function in providing information to people conceived after the establishment of the Register in 1991. The very fact of legal rights, however limited, being granted to one group in society from a particular point in time, serves to highlight the lack of provision for those born earlier. The Steering Group considered that this raised ethical, social and psychological issues of some magnitude that would require detailed exploration in the future. Under the terms of this project we agreed that the issues faced by donor offspring born prior to 1991 and of people who wished to know if they had been conceived by donation, were of sufficient import to warrant some attention in the project report. 3.3 Additionally, the Steering Group recognised that the Register would have significant implications for relatives of donor offspring, donors and their offspring. The importance of addressing their needs was noted by the majority of those who provided evidence to the project. 3.4 Finally, we were of the view that increased awareness of the needs of donor offspring could be of enormous benefit in improving counselling services for recipients and donors at the licensed treatment centres. This too was seen as an important matter for the project’s consideration. Method of working 3.5 The project was divided into two phases corresponding approximately with the two financial years over which the Department of Health grant had been approved. 3.6 In the first year, members of the Steering Group took individual or collective responsibility for a range of tasks related to gathering evidence on: • The specific counselling needs of applicants to the Register and their relatives. • The likely implications for donors, their relatives and offspring. • The type of counselling that would be most appropriate. • Where the counselling services should be located. • The appropriate qualifications and training needs for those providing the counselling. • How public awareness could be raised. 3.7 Evidence was sought from: • Other countries where similar registers have already been established or are in the process of being set up. • Focus groups representing key stake-holders (parents of donor offspring, donor offspring and donors). • The providers of adoption contact registers and counselling services to people who have been affected by adoption. 15 • Individuals and organisations with relevant interests or practice experience in assisted conception. • The literature on psychosocial aspects of gamete donation and origins counselling in adoption. 3.8 The Steering Group met on four occasions during the first stage to agree aims, plan tasks and consider the evidence obtained. Written reports on the interviews, contacts, practice experience and focus group meetings were tabled. These were collated to provide the basis for drafting the project’s report at the end of the year. 3.9 In the second year, a draft report was sent out for consultation to the organisations and individuals originally identified as having an interest and relevant expertise in the project’s aims. Their responses were considered when the final report was written by the Steering Group. The Steering Group regrets that financial constraints limit the number of printed copies of the final report but hopes that this can to some extent be overcome by making the Report available on the BICA web site. The relevance of adoption policy and practice 3.10 In deciding where to focus our resources in seeking evidence for our report, we were aware that only limited experience of counselling donor offspring would be available and that the links between adoption and donor conception are not universally accepted. 3.11 Adopted people are not usually genetically related to their adoptive parents. They have either been relinquished by or removed from their genetic parent(s) either at birth or later. An adoption certificate is issued after the child has been adopted. In adoption legislation the welfare of the child is paramount. Adoption policy is founded on the rights of the child to know about his or her adoption, to know the identity of birth parents and, as adults, to have the opportunity to make a search and to contact birth parents. 3.12 Donor offspring and their parents do not share all these characteristics. In the majority of cases, donor offspring are genetically related to one parent. They have not been legally relinquished as children although some donor offspring report a sense of having been relinquished by their donor. Their birth certificates do not indicate their donor conception. The rights of the child are not deemed to be paramount under the HF&E Act and their legal right to information about their origins is limited. 3.13 However, in both types of families the parents have usually been faced with social and personal issues of infertility and, most importantly, the child has at least one parent who is not their genetic parent. Research evidence about the experiences of donor offspring who have learned the nature of their conception indicates strong similarities in the views held by them and by people who have been adopted: • Earlier disclosure is perceived as preferable to later disclosure. Those learning earlier appearing to have accommodated this information and those told later often wishing they had been told earlier. • Information about the individual's conception may be poorly managed and/or inadvertently disclosed. When this information is revealed later in life, the individual may experience negative feelings about the prior concealment of this information and perceive this secret to be detrimental to their sense of well-being. • Some donor offspring have spoken about an awareness of information being withheld from them and have perceived themselves and their families as ‘different’. Some experienced confusion about where they 'fitted' into their family and about their identity. • Some people express an interest in knowing their donor as a person, but not in a parent/child relationship and not with a view to making financial or emotional demands on the donor. 16 • Some people express awareness of the potential existence of similarly aged half siblings and a desire to identify and locate them. 3.14 Taking all these factors into account, the Steering Group took the view that the similarities between the potential needs of donor offspring and the known needs of adopted people outweigh the differences. We believed that much can be learned from the many years experience, practice wisdom and policy of providing counselling to people affected by adoption. Recommendation 4. The development of counselling services for people affected by donation should be informed by the body of knowledge in the field of adoption. 17 18 4. The Counselling Needs of Adult Donor Offspring 4.1 The Steering Group considered it was important to recognise that people who experience infertility are as able to provide warm, loving relationships and a stable, secure family for their children as anyone else in the population. The Steering Group worked from the view that these would be normal families in all but the method of conception. However, we believe that it will be natural and inevitable for there to be issues to address which are intrinsic to the creation of a family by gamete donation, not due to inherent family pathology. 4.2 It is probable that, for some people, the circumstances of their conception will be of limited interest and importance whilst others will wish to satisfy their curiosity, or have a profound need, for more information. Arguments that support the rights of donor offspring to knowledge of their full genetic and biographical identity underpin the principle that such needs should be treated as normal and responded to positively. There will, however, also be a percentage of people who are deeply distressed by the knowledge of the nature of their conception or by the manner in which they learned of their origins. Their circumstances may profoundly affect their emotional well being and relationships. The family circumstances of applicants will vary and this may affect their attitudes towards donation. The evidence suggests that there will be differences in the range and complexity of needs presented when people apply to the Register. Recommendation 5. A request for information from the Register should be viewed as an expression of normal healthy interest in genetic background information. It should not be assumed that the individual has psychological problems. However, the potential for emotional difficulty should be recognised and responded to appropriately. 4.3 In our multi-cultural society, it is inevitable that cultural differences will have an impact on reactions to being conceived by donation, on the type and range of information that will be requested and on responses to the information on record. For instance, there are cultural differences in the stigma attached to being infertile. There could be very negative connotations to the way donor offspring learn of their origins in families where the stigma is great. In some societies, paternity is highly prized so that knowledge of a father’s infertility could seriously affect an applicant’s relationship with his/her father. In other cultures, the maternal genetic relationship is a criterion for the person’s racial identity so that knowledge of conception by egg donation could have great impact. 4.4 There will be differing circumstances in family formation. Where there is an adopted brother or sister, inequality in relation to legal rights may be the cause of rivalry, envy and grief in family relationships. Similar difficulties could arise if siblings have been conceived by different donors and there are inequalities in the type or quantity of information available. The Steering Group is aware of situations where the first child was conceived by a known donor and is growing up fully informed of this, whereas the second child was conceived by anonymous donation and the donor provided no additional facts about himself. 4.5 How donor offspring learned about their origins, who provided that information and at what point in their life, will also be factors affecting an individual’s counselling needs. Recommendation 6. Whilst counselling is not a mandatory requirement under the Act, it should be presented as a routine part of the procedure when an application for information is received. 19 The personal impact of being conceived by donation 4.6 In some cases, donor offspring may be suffering from low self-esteem and/or depression. Contributing factors might include shock as a result of unplanned discovery, feelings of loss and grief that they may never know about, or have contact with, their absent genetic parent. Unresolved anger may be directed at their parents, the donor or the professionals who may be seen as having failed to provide adequately for the offspring’s information needs. Shame, guilt or ambivalence could inhibit the person’s ability to seek support, resulting in loneliness and isolation. 4.7 Many respondents to our project advised us that some donor offspring could experience ‘genealogical bewilderment’. This is a term used in adoption to describe feelings of incompleteness and a lack of genetic continuity that can fundamentally damage a person’s self-confidence and emotional health. 4.8 Psychological and social difficulties might also result from perceived stigma about infertility and gamete donation, the clinical process involved in the person’s conception or the possibility that the donor acted for financial gain. 4.9 Additionally, some may be affected by their own ethical and moral perspective on the use of gamete donation in assisted conception. Recommendation 7. The impact of being conceived by donation will vary and it should be recognised that both support and therapeutic counselling may be needed. The social and emotional implications of contacting the Register 4.10 The time of contacting the Register is likely to be one of vulnerability for many applicants. Adoption experience and evidence gathered from donor registers would suggest that months or years of doubt and ambivalence often precede it, so that the first approach may be accompanied by considerable anxiety. 4.11 Even amongst those who feel most comfortable about their donor conception, there may be concerns about the amount or type of information to be gained and unexpected reactions when it is received. Counsellors will need to be aware of the range of feelings and expectations of applicants at this time. 4.12 Some will feel guilty towards their parents in seeking information. They may not have felt able to tell parents or relatives of this plan. It may be the first time that they have talked about their donor conception and have a need to pour out long-suppressed feelings. They may need to deal with issues about loyalty and receive reassurance about their right to contact the Register. 4.13 Few will have had access to personal details about the donor and it is likely that there will be many fantasies about his or her status, character and reasons for donating. They may have difficulty accepting the information they receive if it conflicts with previously held beliefs and desires. This may be a cause of distress, confusion and possible psychological difficulty. 4.14 In other instances, parents may have given their offspring inaccurate or misleading information. Disclosure of the truth when information is obtained from the Register may have consequences for family relationships. 20 4.15 Donor offspring are able to ask if they are related to someone they plan to marry. The approach to the Register in these circumstances has very particular emotional implications for the couple concerned. Anxiety is likely to be high and there may be significant fear of the consequences for themselves and their wider family. Recommendation 8. The decision to make an application to the Register may in itself have psychological and social impact and this should be taken into account in the provision of counselling. Expectations and requests 4.16 The need to deal with issues of personal identity is likely to result in a desire for a wide range of information but the expectations and wishes of applicants will vary. Since donors have responded very differently to the opportunity of providing additional information, it will not be possible to advise applicants in advance of what will be on record. 4.17 We anticipate that many applicants will hope for information about the donor’s physical looks, personality, characteristics, family history, specific details of ethnic background, of hobbies, skills and interests, religion and occupation. 4.18 It is thought that the likelihood of anonymous half-siblings will have great emotional impact. Given the fertility problems that led their parents to seek assisted conception, many donor offspring will be ‘only children’ and this could be a factor in their desire to know about half-siblings. 4.19 Some will want information about the donor’s medical history and will possibly have concerns about late-onset conditions to which they could be at risk as well as wishing to know if the donor is still alive. 4.20 The psychological needs being expressed in these requests are extremely complex and will often represent a sense of connectedness, or need for connections, to the donor. Hence the likelihood that people will hope to learn why the donor donated, his/her feelings and thoughts about it since and whether they, the offspring, form part of the donor’s current awareness. It has been suggested that even those who accept that they may not have identifying information, and have no desire for contact, may wish to be given the donor’s first name. This has been described as part of their need to create an image of this genetic parent and to complete their own personal biography. 4.21 The majority of donors have provided only limited information for the Register although it is known that some licensed treatment centres have taken responsibility for keeping more detailed records. It is probable that applicants will have expectations that will not be met and this is a matter of concern. Whilst some will manage their disappointment, there will be others who will be unable to accept the situation. Their frustration and anger will need to be addressed in the provision of counselling and support. Recommendation 9. Any additional non-identifying information about donors that has been collected by the treatment centre should be made available if requested by people seeking information from the Register. Recommendation 10. Prior to factual information being given people should be encouraged to consider their motivations, expectations, needs, hopes and the implications of receiving information, including the possibility that it will differ from their expectations. 21 22 5. The Counselling Needs of Relatives of Donor Offspring 5.1 It is likely that the range and variation in needs anticipated amongst donor offspring will be mirrored by those of their relatives. Individuals and families are likely to differ widely in their circumstances, support systems, attitudes and expectations. Parents of donor offspring 5.2 In some instances, the parents of donor offspring will have been entirely open about the method of conception from early in the child’s life and may be fully supportive of their approach to the Register. However, we received evidence that some parents are concerned about the impact of the experience on their donor offspring. Particular concerns could centre on the possibility of their son or daughter discovering that they are in a relationship with a close relative. There is also likely to be anxiety about a son or daughter’s reaction if information is denied, is limited or differs from expectations. 5.3 Further evidence suggests that some parents would prefer to have information before their offspring reach an age at which they might apply on their own account. Such requests have been related to the process of talking to a younger child about his/her origins. In some cases of relationship breakdown, the parent who is genetically related to the child has wanted to provide the child with more information about the donor than the non genetically-related parent. 5.4 Children and young people who are aware that they are donor offspring may need opportunities to talk to others, including counsellors, independently of their parents. Some parents may need advice and support in order to be reassured that this is a normal and healthy part of their child’s development. 5.5 The Steering Group had particular concerns for families where parents have chosen not to share origins information with their child and where disclosure of this fact is made from another source or is learned inadvertently. The evidence also suggests that some offspring will seek information because they suspect that they are not genetically related to a parent. In some instances parents will only learn of their offspring’s application after the event. The impact on relationships within the family in any of these circumstances could be considerable. 5.6 In cases of marital breakdown, children may become caught up in conflicts and disputes that lead to their hitherto undisclosed donor status being revealed. The potential emotional damage of disclosure under such circumstances should not be under-estimated. Recommendation 11. Counselling should be available at any time to the parents of children conceived by donation. (See also 8.21 – 8.23 and Recommendation 33) Siblings 5.7 Within the family, an application to the Register may also affect the donor offspring’s siblings. Issues of inequality may cause considerable tensions and rivalry to surface and affect relationships in the family. This could particularly occur should one individual wish for and successfully acquire information but another, conceived by the same donor, has no such desire. Equally, difficulties may arise where there are differences in the availability, the quantity and the quality of information that siblings can access. The evidence that donor offspring will have a strong interest in the existence of 23 people who were conceived by the same donor (genetic half-siblings) may have repercussions for the relationship between siblings in the same family. Recommendation 12. Counselling should be available to siblings in families affected by donation either on an individual or family basis. Children of donor offspring 5.8 A decision to seek information from the Register has a potential ripple effect on the children of donor offspring. It is possible that they may not feel ready or be reluctant to deal with genetic connections to someone who has been, and may remain, anonymous. Such information could be unsettling and disturbing, with implications for relationships within the family. Spouses/partners 5.9 The impact on partners will vary and, since donor origins will affect the children of this couple, difficulties could arise if the partner had not been informed until, or after, information from the Register is sought. Extended family 5.10 In families where secrecy has been maintained by the parents of donor offspring there is potential for adverse reactions should relatives learn later of the donor conception. Some may experience difficulty in adjusting to news that the donor offspring is not a genetic relative and the fact that they had not previously been told. Some relatives may feel highly critical of donor offspring for seeking information from the Register, with consequent tensions arising between members of the extended family. Recommendation 13. Counselling should be available to all members of the extended family in recognition that any member could be affected by an application to the Register. 24 6. The Counselling Needs of Donors and their Families 6.1 The Steering Group is aware of assumptions that, since donors volunteer to donate, they will have no significant issues or counselling needs. However, our evidence suggests a number of circumstances in which donors or relatives of donors may need support and counselling. 6.2 At the time of involvement with a licensed treatment centre all donors must be offered counselling but not all take up the offer and, for those who do, there is no standardised approach to the counselling provided. Thus donors will differ not only in whether counselling was received but the extent to which it prepared them appropriately for issues that arise in relation to the HFEA Register. 6.3 In particular we are aware that licensed treatment centres are more likely to ensure the provision of counselling to egg donors than to sperm donors, by having routine referrals for counselling in their clinic protocols. As a result, it is possible that there will be gender differences in the counselling needs of donors. 6.4 We accept that there are differences between individuals in the emotional significance that is attached to a gamete and that this will be one factor that affects attitudes to donation. For some the full implications of having donated may surface later, perhaps as a result of publicity about the Register, their life experience or because they do not have their own children. Their reactions to the existence of anonymous genetically-related children, or the possibility of their existence, may be unexpected and disturbing. 6.5 The establishment of egg-share programmes, with infertile couples offering to donate eggs, raises the potential for significant problems. Some of these women and their partners will not themselves be successful in treatment. We believe that the psychological consequences in later years may be considerable. The Register may be contacted by women wishing for information about the outcome of their donation or asking if any offspring have sought information about them. Failure to gain the desired information may lead to disappointment, frustration and, in some cases, more severe emotional difficulties. 6.6 There is concern about the potential for donors to suffer late-onset genetically transmissible disease. Given the considerable significance of such information for donor-offspring and their families, donors should have access to advice and counselling in relation to this knowledge being shared. Recommendation 14. The availability of “later counselling” for donors should be recognised as a need that may occur at any time in their lives and not only in the immediate period after donating. Children of donors 6.7 Donors who have children will be affected by the existence of the Register. Children who grow up knowing that a parent donated will experience a variety of reactions. In some cases this may cause difficulty in the relationship between child and parent. As these young people develop their own relationships, they may have anxieties and concerns about being related to a boyfriend or girlfriend. In the context of adolescence, when identity and developmental issues are common, this could be an additional difficulty that some families might struggle to manage. 25 6.8 It is also possible that there will be children who are affected by the knowledge that they have, or might have, anonymous half-siblings. A desire to know more, or to search, may be especially felt by those who are only children or have same-sex siblings. 6.9 Donors may not choose to tell their children that they have been gamete donors. It is possible that there will be implications for some families where this information has not been shared but children have been aware that there is a secret in the family. In other instances, children may learn later that a parent has been a donor. It is likely that feelings and reactions will vary. Some may have difficulty in accepting the existence of others who are anonymous but genetically related as half-siblings. Such difficulties could affect the relationships within a family. 6.10 Whilst offspring of donors will have no legal right to apply for information on their own account, we anticipate that such applications will be made. From 16, if planning to marry, they could ask their future spouse to seek information on consanguinity and have needs that parallel those of donor offspring. Recommendation 15. The issues that arise for the children of donors need to be recognised and provision made for counselling at any age that it is deemed appropriate either on an individual or family basis. Spouses and partners 6.11 Our evidence indicates that in some instances partners of donors may need support and counselling. The circumstances in which they learn that their partner donated will vary. Some may have known and approved at the time but subsequently regretted it. Others may have known, not approved and have considerable difficulty with the implications when their own children are born or raise issues about the decision to donate. There will also be partners who only learn at a later date, some of whom may be adversely affected. Extended family 6.12 It is possible that other relatives will be affected by the donor’s decision. The attitudes and reactions of the donor’s parents and siblings will vary. They may be more particularly affected if the donor does not have children, so that parents may be frustrated in their hope of becoming grandparents. They may learn inadvertently or at a time of family conflict about the act of donation with consequent repercussions on family relationships. Recommendation 16. Counselling should be available to the donor’s partner and extended family in recognition that any member may be affected by an application to the Register. Known donation There is virtually no information about the impact on donor offspring, their parents, the donor, the donor’s offspring, the extended family and wider social networks when the donor and recipient are known to each other. In many cases, the donor and recipient couple or individual maintain secrecy about the donation. Issues may arise should this be disclosed at a later date either in a planned way or inadvertently. The nearest parallel would be families where a child is adopted at birth by a family member. It is possible that these families will seek help in future or that young people will present with particular issues related to their origins and relationships within the family. 26 7. Counselling for Individuals Conceived Prior to 1991 and their Families 7.1 The evidence suggests that the majority of donor offspring conceived prior to the 1991 HF&E Act have not been informed about their donor origins. People undergoing treatment in that time were greatly influenced by the culture of secrecy and feelings of shame about male infertility. 7.2 Treatment centres were not legally required to maintain records about gamete donation prior to 1991. It is thought that many centres kept minimal records and some chose to destroy them. We anticipate that there will be a growing number of people who discover that they are donor offspring but will have virtually no means of obtaining any information. Some may be distressed and disturbed by the discovery. It is also likely that the discrepancy in provision between people born prior to and after the 1991 Act will be a cause of dissent and emotional difficulty in some instances. 7.3 Prior to 1991 recipients were offered very little information about donor characteristics beyond that of basic health. Matching for physical characteristics is only known to have become common practice in the 1980s. 7.4 Attitudes to secrecy in gamete donation are changing and an increasing number of children are growing up knowing of their origins from an early age. Others are sharing information about their experience of learning at a later age that they were conceived by donation. 7.5 Amongst young people who are aware of their donor conception there is a particular interest in learning if they resemble the donor and for many there is a strong need for information about siblings conceived by the same donor in other families. DNA testing offers one route by which some people will be able to identify such siblings. 7.6 Parents of donor offspring are likely to have a range of experiences, attitudes and feelings about sharing information with their children. Publicity about the Register may lead some to be troubled by their past decisions and to need counselling to enable them to manage the issues that are raised. Feelings of shame, guilt and sadness may be reactivated. Fear about the implications of secrets having been kept may lead to uncertainty about how to act in the best interest of their children and themselves. Their offspring may have learned in an unplanned way about their origins and this might have a significant impact on the relationship with their parents. 7.7 There is evidence from Australia to suggest that donors who had initially chosen to be anonymous are not inevitably threatened if contacted when donor offspring wish for information. In some instances they are willing to consider being identified and having contact. It is significant that, as a result of publicity about donation in Victoria, the Infertility Treatment Authority received 38 unsolicited calls from sperm donors enquiring how to lodge information for offspring who might be seeking contact. Recommendation 17. Further work should be done to establish a system of advice, support and counselling for people affected by donation prior to 1991. This should include, as a priority, the setting up of a Voluntary Register that provides an intermediary service in addition to counselling for all parties. 27 28 8. Staffing and Service Delivery 8.1 When considering how to ensure that the counselling service will be effective and appropriate to the needs of applicants to the Register, the Steering Group paid particular attention to service organisation, staffing, record keeping and funding. Emphasis was given to the key principles of accessibility, confidentiality, flexibility and personal privacy in service provision. With this in mind we considered a variety of models that might be applied and the stages through which an applicant might need to progress. Recommendation 18. Accessibility, confidentiality, flexibility and personal privacy should be the hallmarks of the counselling service. Service organisation 8.2 The records on donors and people who have received treatment are held centrally at the HFEA and it was not felt that this required change. However, applications may be received from any part of the UK and overseas and the counselling provision can only be accessible if it is nation-wide and available to people living out of the country at the time of application. 8.3 In recognition of the potential vulnerability of applicants and others affected by their origins, it will be critical for each application to be responded to without delay and with sensitivity. Written information about the applicant’s rights and the procedures involved in obtaining information will play an important part in enabling a person to proceed with their request. Recommendation 19. There should be a dedicated telephone line for people enquiring about access to information from the Register. This should be staffed during office hours and have an answer-phone facility after hours. 8.4 Given that applicants may know little of what to expect when they apply and some may have unrealistic expectations, they will need clear and accurate written information about the kind of records that have been kept, including the possibility that very little personal information has been provided by the donor. Recommendation 20. Written information about the applicant’s legal rights, the procedures for obtaining information and the variation in information that may be recorded should be provided promptly on receipt of an application to the Register. 8.5 The majority of respondents to the project shared concerns about applicants receiving information in an impersonal way and without adequate preparation. It was not felt appropriate to send the information by post on receipt of an application nor for an applicant to be handed information direct from the Register. The importance of prior counselling was reiterated throughout our discussions. Recommendation 21. Written information should include an explanation about the importance of counselling as an essential preparation to receiving factual information. 8.6 Imparting sensitive information is a skill of high order. The impact on the recipient may be considerable and the messenger needs to have expertise in both giving the information and meeting 29 the needs of the recipient. Professionally qualified counsellors have considerable skill in both of these difficult tasks. Recommendation 22. The person providing the counselling should also have responsibility for providing the information held on record. Provision for this should be made under the Human Fertilisation and Embryology (Disclosure of Information) Act 1992. 8.7 The service should be sensitive to a wide range of needs and the likelihood that an individual’s needs may change over time. It is anticipated that some applicants will need more time to explore their feelings, their reasons for seeking information and the implications for themselves and others. Recommendation 23. The structure of the counselling service will need to be flexible, open-ended and client-centred. Applicants should not be restricted or time-limited in their access to counselling. Staffing 8.8 Accessibility of the service will depend on establishing a nation-wide network of counsellors. Applicants will need to be provided with information about the counselling available in their area including names, contact details and whether costs will be involved. 8.9 Not all applicants will be living in the UK at the time of contacting the Register. The Steering Group noted that further work would be needed on the counselling provision for people residing overseas. 8.10 Some applicants may choose to visit the Register at the time of their request for information. Given the considerable range of personal circumstances and the possibility of emotional vulnerability amongst those who apply, it will be important for there to be a designated member of staff at the Register who is able to explain the procedures for obtaining information and provide written information, including the availability of counselling. Specific training in communication skills and the context of this work will be required. Recommendation 24. Counselling should be available throughout the UK. Applicants should be provided with written information that includes names and contact details of counsellors. Recommendation 25. Further work should be done to establish the counselling provision for people residing overseas at the time of application. Recommendation 26. There should be a designated member of staff at the HFEA Register who has had basic training in communication skills and the psychosocial issues related to gamete donation. This person should be available to provide verbal and written information to applicants who apply in person. 8.11 The Steering Group looked at the range of qualifications that could be appropriate to this area of counselling. Donor offspring who will be eligible to apply in the early years after the Register opens will be young adults. The majority will have a normal and healthy interest in additional knowledge about their origins but there may be serious personal or relationship and family implications that follow from their application. Counsellors seeing donor offspring will need to be client-centred and have skills in working with young adults with a range of needs from simple information and explanation to therapeutic intervention. They will need specific knowledge and expertise in issues of loss, identity and family formation. A proper understanding of the social, family and cultural context within which the donor offspring has lived will also be required. This will involve specific knowledge of psychosocial 30 issues in infertility and reproductive medicine including the implications of secrecy in families, as well as grounding in legal, ethical and cultural issues. 8.12 In some instances, applicants to the Register will have significant difficulties that will require therapeutic intervention. Counsellors will require skills in assessing the need to refer people to appropriate specialists and have information about resources in the person’s local area. Recommendation 27. People appointed as counsellors in relation to the HFEA Register should either have a professional counselling qualification at recognised diploma level or a relevant professional qualification and two year’s full-time post-qualifying experience in counselling individuals, couples and families. They will need to have sufficient knowledge and understanding of assisted conception treatments and their implications for the individuals and families involved. Recommendation 28. Specialist training should be provided for counsellors in this new field and evidence of satisfactory completion of training should be a criterion for appointment. These courses should be professionally accredited. 8.13 Given that this will be a new field of counselling with some unique characteristics, particular consideration will need to be given to support and supervision of counsellors. Recommendation 29. Arrangements should be in place for the provision of specialist supervision and support for counselling staff. Record keeping 8.14 The importance of collecting and maintaining records should not be underestimated. In the course of their work, counsellors will accumulate knowledge and practice experience that will be needed if future policy and service provision are to be properly informed. However, it is essential that issues of confidentiality are respected at all times in the keeping of, and access to, records. Policies on confidentiality will need to be consistent with those of professional counselling practice. Recommendation 30. A framework for recording needs to be in place to ensure that counsellors are consistent in the way they record and account for their work. Access to records should be consistent with professional practice in other fields of counselling but should provide information for the proper audit, monitoring and evaluation of service provision. Funding and location of counselling 8.15 The Steering Group sought information and advice about alternative forms that funding of the service might take and where counselling should be located. It concluded that it is important for decisions about funding to be guided by the principles of equality and accessibility. Both principles demand that an applicant’s access to counselling is not limited by any factor within their social or cultural circumstances. 8.16 Amongst the suggestions made by respondents to the project were proposals that: • In future, people undergoing treatment with gamete donation pay an additional fee to the HFEA at the time of treatment specifically for the funding of counselling to donor offspring and those affected by donation. 31 • A new charity be set up with the specific purpose of providing counselling to people affected by gamete donation. Funding to be available through direct government grants, local authority service level agreements and fund-raising. • Counselling to be an additional role undertaken by infertility counsellors in licensed clinics at no extra charge to applicants to the Register. 8.17 One of the difficulties to be addressed is the likelihood that some of the people who apply for information will not be affected by gamete donation. Their counselling needs could not be met through funding arrangements paid for by recipients nor could they be referred to the licensed treatment centre attended by a parent or donor. 8.18 Having taken all these factors into account, the Steering Group’s view was that people seeking information from the HFEA Register should have parity with people who are affected by adoption and who are seeking information about their origins. Appendix 5 provides information on the service available to the latter. Of particular relevance is the requirement placed on all local authorities in the UK to maintain a service designed to meet the needs of all parties to adoption. This includes the provision of counselling without charge. 8.19 Donor offspring and children of donors will not be seeking counselling in relation to infertility and they may not feel comfortable about attending a licensed treatment centre to see a counsellor. Others may feel that any medical setting is intimidating. The Steering Group took account of current practice in other countries but we concluded that counselling within the licensed treatment centres would not be the most appropriate location. 8.20 The Steering Group supported the view of respondents who advocated ‘neutral’ territory for the location of counselling. Recommendation 31. Applicants to the Register should not be charged a fee either for the provision of information or for counselling. Funding arrangements should reflect arrangements in place for people affected by adoption in the UK and involve statutory provision via local authorities, health authorities and the government. Recommendation 32. Local authorities should have the power to delegate the counselling responsibility to designated, accredited counsellors nationwide or to a specific organisation designated to provide the counselling. 8.21 Parents of people conceived by donation and donors will have had a specific relationship with a licensed treatment centre. Those attending post-1990 would have been offered counselling at the time of treatment. There is evidence to suggest that a majority of those involved in egg donation and recipients in the case of sperm donation, will have received counselling. 8.22 An application to the Register may revive feelings and issues about infertility for people whose children were conceived by donation. The skills and knowledge of infertility counsellors will remain relevant to their needs during their lifetimes. 8.23 It is therefore possible that a number of parents of donor offspring and donors will prefer to seek counselling at the original licensed treatment centre. 32 Recommendation 33. Parents of people conceived by donation and donors should have the option of seeking further counselling at the licensed treatment centre at any stage when issues related to donation arise. This service should be accepted as part of the centre’s duty of care and would be in accordance with the need to take account of the welfare of children and with the HFEA Code of Practice. Publicity 8.24 The Steering Group was concerned about evidence from the field of adoption that many people are unaware of the services available to people affected by adoption. It highlighted the importance of planning a public awareness campaign both in the short-term when the Register can first be accessed, and of sustaining long-term awareness. The Steering Group received a number of recommendations on publicity: • Written information targeting relevant professional associations and consumer groups. • Posters in public places such as GP surgeries, libraries, schools, colleges and universities, young people’s counselling agencies, Citizens Advice Bureaux’s, family planning clinics and licensed treatment centres. • Leaflets especially for recipients and donors at time of treatment, for all staff at licensed treatment centres and other health service staff. • Dissemination of information via TV and radio programmes (documentaries and ‘soaps’) and magazines. • Official launch and press release when the HFEA Register first opens to 16 year olds and then again when the first 18 year olds can apply. • Appropriate use of the Internet. Recommendation 34. When the Register first becomes accessible to applicants a public awareness campaign should be organised in the short-term and a means should be established of sustaining long-term awareness. 33 34 9. Further Recommendations Access to identifying information 9.1 The Steering Group believes that, should regulations be made giving people who have been conceived by donation the right to identifying information on the donor, there will be issues to address in addition to those noted thus far in our Report. 9.2 Individuals will differ in their motivations, expectations and needs when seeking identifying information. There will be variations arising from differences in social circumstances, family history, cultural influences and personality development. 9.3 There will be differences in the amount and type of information that is sought. We anticipate that whilst some people might only wish for more factual information about the characteristics and current circumstances of the donor, others may want direct contact. 9.4 Issues may arise for siblings in the family. For instance, when one young person comes of age for accessing identifying information and seeks contact, there will be implications for younger children conceived by the same donor. 9.5 There will also be a range feelings and reactions amongst donors when further information or contact is sought. Some may have been ill-prepared for this event whilst others may find it very welcome. 9.6 Partners, members of the donor’s immediate family and the extended family may also be affected by access to identifying information with a similar range of reactions and responses. 9.7 The Steering Group is of the view that access to identifying information will bring considerable benefits to people affected by donation. We are, however, aware of the potential for distress to the parties concerned, hence the importance of offering advice, support and assistance in any situation where information or contact is sought. 9.8 It will be important to respect an applicant’s autonomy and right to choose whether to take up the offer of counselling whilst also ensuring that any decision is well informed. Recommendation 35. Should new regulations allow access to identifying information, referral for consultation should be a mandatory requirement prior to such information being given. Recommendation 36. The person providing the consultation should be counselling trained but respect the right of the applicant to choose whether to also use the consultation as a counselling opportunity. Recommendation 37. Counselling should seek to clarify the person’s motivations, their expectations and the implications of contact being made. It should aim to prepare people for receiving identifying information, to anticipate their reactions and plan appropriate action following counselling. Recommendation 38. Counsellors should act as intermediaries between the person conceived by donation and the donor to ensure that the process of making contact respects the feelings and needs of all parties. Every effort should be made to prepare people for contact and to anticipate any difficulties that may arise. 35 Recommendation 39. Ongoing counselling should be available to any party involved after contact has been made. 9.9 Considerable skill and expertise will be needed by those providing counselling and support. Infertility counsellors will not have experience or knowledge in intermediary work unless they have practice experience in parallel fields such as adoption linking. However, their expertise in the psychosocial issues of infertility and gamete donation will have direct relevance in understanding the implications for donors and the parents of people conceived by donation. Recommendation 40. In addition to the qualifications cited in Recommendation 27 of this report, counsellors or those acting as intermediaries should be specifically trained and be accredited prior to being appointed for this work. Recommendation 41. In some cases it may be appropriate for infertility counsellors to work jointly with other accredited counsellors during the process of contact and mediation. Recommendation 42. Specific training courses will need to be established and we recommend that these be planned with full reference to existing training expertise in adoption contact counselling. Recommendation 43. Written protocols for the provision of counselling and mediation should be developed and adhered to. Counselling of recipients and donors 9.10 The person providing counselling in licensed treatment centres is not always a professionally qualified counsellor and very few counsellors have yet achieved accreditation through the Infertility Counselling Award. It is likely that the counselling at licensed treatment centres will not have sufficiently prepared recipients or donors for the time when offspring will be seeking information from the Register. 9.11 A relevant body of knowledge is already available through the Donor Conception Network, the literature on psychosocial aspects of gamete donation and the field of adoption. Further information will be provided through counsellors who are working with people when they apply to the HFEA Register. Recommendation 44. Immediate work should begin in devising and delivering training on the future needs of people affected by donation to counsellors in licensed treatment centres. Recommendation 45. The content of these training courses should be informed by current knowledge in donor conception families, the field of adoption and by the relevant literature. Recommendation 46. The Infertility Counselling Award should be reviewed to ensure that infertility counsellors have the knowledge, skills and competencies related to any Regulations made under Section 31 of the HF&E Act (1990). Recommendation 47. A new BICA Practice Guide on implications counselling for gamete donors and recipients should be written and published as part of the available training and practice material. 36 10. Summary of Recommendations General Recommendation 1. The Steering Group recommends that arrangements for the counselling to be provided in relation to the HFEA Register be formally planned and set in place well in advance of the date when first applications may be made. Recommendation 2. Changing attitudes towards donor anonymity should be acknowledged and taken into account in the planning of services related to the HFEA Register. Recommendation 3. Services for people affected by gamete donation should be capable of responding to an increasing demand. Recommendation 4. The development of counselling services for people affected by donation should be informed by the body of knowledge in the field of adoption. The Counselling Needs of Adult Donor Offspring Recommendation 5. A request for information from the Register should be viewed as an expression of normal healthy interest in genetic background information. It should not be assumed that the individual has psychological problems. However, the potential for emotional difficulty should be recognised and responded to appropriately. Recommendation 6. Whilst counselling is not a mandatory requirement under the Act, it should be presented as a routine part of the procedure when an application for information is received. Recommendation 7. The impact of being conceived by donation will vary and it should be recognised that both support and therapeutic counselling may be needed. Recommendation 8. The decision to make an application to the Register may in itself have psychological and social impact and this should be taken into account in the provision of counselling. Recommendation 9. Any additional non-identifying information about donors that has been collected by the treatment centre should be made available if requested by people seeking information from the Register. Recommendation 10. Prior to factual information being given people should be encouraged to consider their motivations, expectations, needs, hopes and the implications of receiving information, including the possibility that it will differ from their expectations. The Counselling Needs of Relatives of Donor Offspring Recommendation 11. Counselling should be available at any time to the parents of children conceived by donation. (See also 8.21 – 8.23 and Recommendation 33) Recommendation 12. Counselling should be available to siblings in families affected by donation either on an individual or family basis. 37 Recommendation 13. Counselling should be available to all members of the extended family in recognition that any member could be affected by an application to the Register. The Counselling Needs of Donors and their Families Recommendation 14. The availability of “later counselling” for donors should be recognised as a need that may occur at any time in their lives and not only in the immediate period after donating. Recommendation 15. The issues that arise for the children of donors need to be recognised and provision made for counselling at any age that it is deemed appropriate either on an individual or family basis. Recommendation 16. Counselling should be available to the donor’s partner and extended family in recognition that any member any be affected by an application to the Register. The Counselling Needs of People Conceived by Donation Prior to 1990 Recommendation 17. Further work should be done to establish a system of advice, support and counselling for people affected by donation prior to 1990. This should include, as a priority, the setting up of a Voluntary Register that provides an intermediary service in addition to counselling for all parties. Staffing and Service Delivery Recommendation 18. Accessibility, confidentiality, flexibility and personal privacy should be the hallmarks of the counselling service. Recommendation 19. There should be a dedicated telephone line for people enquiring about access to information from the Register. This should be staffed during office hours and have an answer-phone facility after hours. Recommendation 20. Written information about the applicant’s legal rights, the procedures for obtaining information and the variation in information that may be recorded should be provided promptly on receipt of an application to the Register. Recommendation 21. Written information should include an explanation about the importance of counselling as an essential preparation to receiving factual information. Recommendation 22. The person providing the counselling should also have responsibility for providing the information held on record. Provision for this should be made under the Human Fertilisation and Embryology (Disclosure of Information) Act 1992. Recommendation 23. The structure of the counselling service will need to be flexible, open-ended and clientcentred. Applicants should not be restricted or time-limited in their access to counselling. Recommendation 24. Counselling should be available throughout the UK. Applicants should be provided with written information that includes names and contact details of counsellors. Recommendation 25. Further work should be done to establish the counselling provision for people residing overseas at the time of application. 38 Recommendation 26. There should be a designated member of staff at the HFEA Register who has had basic training in communication skills and the psychosocial issues related to gamete donation. This person should be available to provide verbal and written information to applicants who apply in person. Recommendation 27. People appointed as counsellors in relation to the HFEA Register should either have a relevant professional counselling qualification at recognised diploma level or a relevant professional qualification and two year’s full-time post-qualifying experience in counselling individuals, couples and families. They will need to have sufficient knowledge and understanding of assisted conception treatments and their implications for the individuals and families involved. Recommendation 28. Specialist training should be provided for counsellors in this new field and evidence of satisfactory completion of training should be a criterion for appointment. These courses should be professionally accredited. Recommendation 29. Arrangements should be in place for the provision of specialist supervision and support for counselling staff. Record keeping Recommendation 30. A framework for recording needs to be in place to ensure that counsellors are consistent in the way they record and account for their work. Access to records should be consistent with professional practice in other fields of counselling but should provide information for the proper audit, monitoring and evaluation of service provision. Funding and Location of Counselling Recommendation 31. Applicants to the Register should not be charged a fee either for the provision of information or for counselling. Funding arrangements should reflect arrangements in place for people affected by adoption in the UK and involve statutory provision via local authorities, health authorities and the government. Recommendation 32. Local authorities should have the power to delegate the counselling responsibility to designated, accredited counsellors nationwide or to a specific organisation designated to provide the counselling. Recommendation 33. Parents of people conceived by donation and donors should have the option of seeking further counselling at the licensed treatment centre at any stage when issues related to donation arise. This service should be accepted as part of the centre’s duty of care and would be in accordance with the need to take account of the welfare of children and the HFEA Code of Practice. Publicity Recommendation 34. When the Register first becomes accessible to applicants a public awareness campaign should be organised in the short-term and a means should be established of sustaining long-term awareness. 39 Further Recommendations Access to Identifying Information Recommendation 35. Should new regulations allow access to identifying information, referral for consultation should be a mandatory requirement prior to such information being given. Recommendation 36. The person providing the consultation should be counselling trained but respect the right of the applicant to choose whether to also use the consultation as a counselling opportunity. Recommendation 37. Counselling should seek to clarify the person’s motivations, their expectations and the implications of contact being made. It should aim to prepare people for receiving identifying information, to anticipate their reactions and plan appropriate action following counselling. Recommendation 38. Counsellors should act as intermediaries between the person conceived by donation and the donor to ensure that the process of making contact respects the feelings and needs of all parties. Every effort should be made to prepare people for contact and to anticipate any difficulties that may arise. Recommendation 39. On-going counselling should be available to any party involved after contact has been made. Recommendation 40. In addition to the qualifications cited under Recommendation 27 of this report, counsellors or those acting as intermediaries should be specifically trained and be accredited prior to being appointed for this work. Recommendation 41. In some cases it may be appropriate for infertility counsellors to work jointly with other accredited counsellors during the process of contact and mediation. Recommendation 42. Specific training courses will need to be established and we recommend that these be planned with full reference to existing training expertise in adoption contact counselling. Recommendation 43. Written protocols for the provision of counselling and mediation should be developed and adhered to. Counselling of Recipients and Donors Recommendation 44. Immediate work should begin in devising and delivering training on the future needs of people affected by donation to counsellors in licensed treatment centres. Recommendation 45. The content of these training courses should be informed by current knowledge in donor conception families, the field of adoption and by the relevant literature. Recommendation 46. The Infertility Counselling Award should be reviewed to ensure that infertility counsellors have the knowledge, skills and competencies related to any Regulations made under Section 31 of the HF&E Act (1990). Recommendation 47. A new BICA Practice Guide on implications counselling for gamete donors and recipients should be written and published as part of the available training and practice material. 40 Appendix 1: A Qualitative Study Looking at the Counselling Needs of People Seeking Information from the HFEA Register The initial stage of this project has involved gathering information from a wide range of sources both within the UK and overseas. This has included the setting up of focus groups to seek the views of key stakeholders (donor offspring, parents of donor offspring and donors). This section of the report considers the groups’ views on five major areas of interest identified in the aims and objectives of the project. The groups considered: a) The specific counselling needs (if any) of the applicants and their relatives. b) Where counselling should be offered. c) How it should be funded. d) What specialist training (if any) would be required for those providing the counselling. e) How public awareness could be improved. Design Three groups were run in London, Bristol and York. The purpose of these groups was to hold an informal discussion during which participants could consider and discuss the five key issues outlined above. For those not able to take part in the groups but interested in being involved in this project, information was collected through questionnaires mailed through the post. Participants A total of 27 people took part with each group consisting of seven people plus two facilitators. A mailing was sent out to the membership of the Donor Conception Network (DCN) and to other interested stakeholders who had made themselves known to members of the Steering Group. The Donor Conception Network’s membership is made up largely of those parents who have used donor insemination as an infertility treatment. This, together with the anonymity of donors and the very few known adult donor offspring resulted in the majority of each group being parents who had received or were receiving donor sperm or eggs as an infertility treatment (88%). Donor offspring and egg and sperm donors made up the remaining participants in each group (12%). Mailing The mailing was sent to the Donor Conception Network membership in the London and the South West and to participants at a DCN York meeting, who came predominantly from the North. The areas selected for mailing were aimed at getting as wide and as diverse a geographical representation as possible. The mailing consisted of a letter inviting participants to be involved in a group discussion and outlining the main aims of the group. Travel expenses were offered as an incentive and help with arranging childcare. Individuals were given the option to take part in the project or, if unavailable but wanting to be involved, to answer a questionnaire. In addition, the mailing included several accompanying pages outlying the aims of the project and a stamped addressed envelope. Participants were allocated to the group on a ‘first come, first serve’ basis. Those who wanted to take part but were unsuccessful were sent a further mailing explaining why they had been unsuccessful and offering them a further opportunity to take part by answering the enclosed questionnaire. A total of 82 questionnaires were sent out and 27 were returned with 26 completed and one blank but with a covering letter providing answers to the questions. 41 Data Data were collected through ‘note-taking’ during the group and summarising back to participants verbally or using a board to visually outline the main points agreed. This ensured verification by the participants for its inclusion. All information related to the main aims was included as relevant (whether or not it was the majority view), as long as at least one individual agreed that it was a true reflection of their opinion. This was intended to reflect the diversity of expectations and needs that may be presented to counsellors from those seeking information from the Register. This information was collated by each group and written up. The facilitators from each group then met and shared information in order to check that all the aims of the groups had been achieved. Each view represented in the written reports was discussed in detail to ensure that it could be firmly located within the group discussion itself and was reported in the original notes. The data from each returned questionnaire were also discussed and written up in the same manner. From this, the final report was then constructed and read by each facilitator to validate its content and interpretation. Analysis Counselling/therapeutic issues • Potential loss and grief over never knowing their donors. The absence of identifying information about a genetic parent was considered by a donor offspring to be potentially threatening to the identity of that individual. As with adopted people, it was deemed likely that some applicants may need to resolve feelings of loss and grief at never knowing their donors. • A sense of genetic incompleteness. In the absence of identifying information and unable to build up a full picture of where they came from and what characteristics, temperament, physicality and health factors they had inherited, individuals might experience a sense of having incomplete identities. • Anger or frustration if the amount of information available about their donor is small. • A sense of injustice. If differing amounts of information are available (e.g. some clinics obtain more information than others, some donors will be identifiable), then some applicants might need to focus on their experiences of ‘unfairness’ or ‘injustice’ within a system that has disadvantaged them in relation to others. • Feelings of abandonment by their donor/genetic parent. A donor offspring expressed concern that donors’ rights to remain anonymous and their right to decide how much information they provide about themselves for their offspring might leave individuals feeling abandoned and not valued. This is likely to have implications for donor offspring’s self esteem and social worth. • Feelings of abandonment by the medical profession for not making adequate provision for the collection of information and for supporting the recruitment of anonymous donors. • Issues of trust and loss of trust. Secrecy in families has been shown to have a negative affect on family dynamics. Individuals may, therefore, experience loss of trust in their family, which might be transferred onto other relationships (if they discover that their parents have withheld information from them or they feel that clinics or the Register are withholding information). • A need to know that each individual’s quest for information is valued and understood. Applicants, who have previously been denied access to information and whose families have held secrets about 42 their conception, may feel that their quest for information has not been valued. In addition, societal and medical attitudes to anonymity for donors may equally leave donor offspring, donors and their families feeling that they do not have a ‘right to know’. These ‘needs’ and ‘rights’ would require acceptance and positive valuation by the counsellor. Counselling needs An assessment of individual counselling needs would have to be made on a case by case basis and the appropriate form of counselling identified. • Counselling needs will vary depending on: - the amount of information available to each applicant - whether information is identifying or non-identifying. • Counselling needs would be different if identifying information becomes retrospective. For example applicants may wish to initiate searches for their donor. Consideration needs to be given to whether counsellors facilitate this process or merely help applicants to decide what they want to do. Resolution of finding or not finding the donor is likely to be a consideration. Counselling for donors and their families who are unexpectedly approached, or who do not want to be found, may also be requested. • The use of imported sperm will present particular implications and difficulties. What are the legal rights of those conceived from imported sperm? How easy/difficult might it be for the Register to access any information for these applicants or facilitate searches. What are the implications of being genetically connected to someone from a different country, culture or religion? • Donor offspring may wish to know about half-siblings. It was suggested that donors might have donated for other couples or have families themselves. It seems likely, therefore, that donor offspring may well have other genetic relations that they do not know about. This is likely to have psychological implications for completing an individual’s identity (for example being able to see oneself reflected in another) but also in practical terms it will be important that donor offspring can find out if they are related to those people that they select as sexual partners. • Egg donor offspring may have different needs to sperm donor offspring. For example, it was felt that society holds the maternal relationship in particular regard, often favouring the mother in custody applications. If accurate, how might this affect an individual’s needs? In contrast, negativity is often expressed at a societal level about absentee fathers and how well fathers can fit the ‘caring’ role. How might this affect individuals’ feelings? Egg donor offspring, although not connected genetically, are nurtured within the womb and delivered by their ‘social’ mothers. What, if any, effects does this and many other differences between egg and sperm donor offspring have on an individual’s needs? • Those conceived as a result of both donor egg and sperm or donor embryos may have greatly increased needs. • Counselling provision is likely to be needed for the families of donor offspring (e.g. parents, spouses, children, and donors) as well as their partners. All members of the donor egg/sperm/ embryo treatment process are likely to be affected and may therefore request counselling. Counselling may therefore need to be broad based, with both individual counselling and family/ couples therapy being available. 43 • Spiritual, existential and psychological needs (i.e. the meaning it holds for the individual) are likely to be just as important as medical/genetic information. • Parents may wish to obtain information on their children’s behalf, or children may seek information themselves before they come of age. Counselling may be required to enable them to deal with refusal of access to the information under current legislation. Where should counselling be offered? • One of the first issues raised was who should be the main point of contact? It was suggested that the HFEA should be the first point of contact and that perhaps a leaflet could be sent outlining the purpose of the Register and what individuals were going to be able to find out, as well as what they were not going to find out. • Offspring could be categorised using a rating system of 1-10 indicating how much information may be available to them from the Register. • Counselling venues need to be sensitively chosen. Some people felt that the original licensed centre or a hospital setting would be inappropriate. Firstly, its medical environment might not be conducive to the counselling context and secondly unresolved issues relating to conception or treatment might make it difficult for individuals to attend. An independent venue, therefore, seemed preferable. • Locations should be available and accessible around the country and it might be that counsellors could see individuals in their normal counselling setting, if deemed appropriate (see above). • Other recommendations were for a neutral location, e.g. a GP’s surgery; a post-adoption centre. • Some people suggested that a national network could be organised along similar lines to postadoption networks. Alternatively, the HFEA could utilise the facilities/networks of organisations such as the Children’s Society/Barnardos etc. Others felt that the counselling network for donor offspring and their families should be independent of other groups in order to avoid any potential negativity attached to adoption or charitable organisations. • A help-line number could be set up, so that those seeking information would have a contact point, which could be found in their local libraries/voluntary service centres or telephone directories. The help-line could provide initial telephone counselling. If such a service was available, how should it be funded? • Funding for future counselling could be part of the cost of the treatment. Those funded by the NHS would be eligible to counselling funded by the NHS. Those who paid privately would be charged an overall fee, which included an amount for counselling. Possibly the fee could be introduced as a registration fee to the HFEA, with leaflets about the Register being provided, highlighting the possible psychological implications of gamete and embryo donation. Funding could then be itemised as part of the treatment package to encourage openness in the future by publicising the Register and by raising recipients’ awareness of the potential psychological issues and the potential need for donor offspring to seek information. 44 • Funding should be a public expenditure. Some participants felt that, because infertility treatment was universally adopted as ethical and acceptable practice and that anonymity for donors or privacy for parents is decided at a governmental level, any ongoing psychological implications that result from such treatments and decisions should also be paid for by the state. • Funding could be a 50/50 match between the government and fertility clinics. • Funding could provide brief counselling but the number of sessions would need to be clearly outlined to the client in advance. If further counselling is required then the options for the client should be clearly outlined from the beginning. For example, they may wish to continue seeing their counsellor privately or visit their GP and investigate the possibility of psychological support through the Primary Care psychology services, or counsellor in the practice team. What sort of specialist training (if any) should be offered to counsellors? General: • Counsellors should be a member of a recognised professional body. • It was felt that the listening skills, intrinsic to the counselling process, would be crucial if counsellors are the first points of contact for those ringing up to make general enquiries. They would also need to have an in-depth knowledge of the HFEA regulations that govern the information available to those approaching the Register. • Although some participants felt that it would be helpful if the counsellor had some specialist knowledge or had taken part in a specialist training (such as the BICA/BFS Infertility Counselling Award), most participants felt that the core counselling skills of empathy and a willingness to focus on the individual’s needs would be the most important qualities required. • If specialist training is required, then individuals felt that an in-depth knowledge of the relevance/ importance of genetics and family traits would be necessary. For example, understanding the psychological implications of not being related genetically to one or both parents and the importance for identity formation of knowing parental characteristics/traits/health status, seemed to be a universal concern. • Other participants felt that relationship and couple counselling would be important skills for counsellors because of the possible threat to these relationships from new information from the Register. In addition, experience of working with adolescents or knowledge about the identity transition phase in adolescence was felt to be useful. It would seem, therefore, that counsellors who have an in-depth knowledge about identity and the possible threat to identity faced by those seeking information would be well placed to counsel anyone approaching the Register. • Although some participants felt that nurses with basic counselling skills could offer counselling, others felt that this was insufficient and that the ‘medical’ association may be inappropriate. Counselling for recipients of donated sperm, eggs and embryos: • For people receiving treatment, it was felt that a nurse might be more appropriate than a counsellor because of the stigma often associated with counselling but it was stressed that clinic 45 staff would need to be trained to remain impartial and non-judgmental. However, concerns were expressed about the ability of nursing staff to remain impartial because of the negative attitude within some clinics towards openness and the provision of identifying or non-identifying information. Training of those providing counselling in clinics may need to consider the importance of these factors and this approach should be standardised across all licensed treatment centres. Counselling for donors: • It was felt that counsellors should be trained to meet professional standards. At present, clinics provide the HFEA with different amounts of information about the donors. Participants felt that counsellors should be trained to encourage donors to give more comprehensive personal information. Part of this process should be to educate donors about the possible future psychological implications of anonymity and a need for genetic information. It was felt that this should meet standardised criteria set for all clinics. Should public awareness be raised and if so, how? The majority of individuals in the group believed that public awareness should be raised for the following reasons: • To create awareness for young people who thought they might be donor offspring but were never told and who, without public awareness, may not know of the existence of the HFEA Register. • To create awareness about the Register for young people who were told they were donor offspring but were unaware of the existence of the Register. • To enlighten parents about the information and counselling options available to their donor offspring in the future. • To help publicise openness in a positive way and highlight the possible psychological implications of anonymity for donors, so increasing the number of donors who would be willing to be identified. • To broaden education about infertility treatment using donated sperm, eggs and embryos and to show that there need be no stigma attached to being a donor offspring. • To help reduce any stigma attached to the concept of ‘counselling’ by building public awareness about the need for counselling those seeking information from the Register and the types of problems they might be facing. (Raising public awareness might be a way to attract funding for counselling/the Register.) Those who were concerned about raising public awareness drew attention to the following: • Concern about unwanted and negative press attention. One couple expressed concern that the general public was often unsympathetic towards the issue of donated gametes. Another couple felt that the tabloid newspapers were irresponsible and were waiting to make lascivious headlines out of donor offspring stories. • Concern that increased publicity would discourage egg and sperm donors. 46 Suggestions about how publicity could be increased were as follows: • Through articles in teenage magazines. • Via the Internet. • Awareness could be raised through the public health education system. Schools currently run personal, social and health education classes, which often handle topics such as infertility, pregnancy and adoption. Consideration of the implications of being a donor offspring, the ethics involved in donating gametes and the implications for parenthood would be appropriate within this setting. In addition, it would have the advantage of allowing children to have considered the psychological implications of such treatments and the role of counselling within that process before they reach the age of planning a family themselves. • Leaflets could be available in GP surgeries and clinics. • Programmes, in particular ‘soaps’, could feature a storyline (as they have with other sensitive topics), handling the question of being a donor offspring, the psychological implications of not being related genetically to one or both parents and what it might mean not to have identifying information about the donor. It could follow the whole process, right through to seeking information from the Register and having counselling. Conclusion The data from these focus groups indicate that the counselling needs of those seeking information from the HFEA Register will be potentially far-reaching and complex. Psychological issues related to loss, grief, abandonment, trust and genetic incompleteness might arise. There will also be implications for the applicant’s close relatives, for donors and their families and differences may arise between those conceived using donated sperm, donated eggs and donated embryos. It seems therefore that the single most important factor in providing appropriate counselling is to attend to the individual needs of those presenting to the Register. No assumptions should be made about how applicants might be feeling or what might be the specific issues raised for that applicant. Therefore the training of counsellors does not perhaps have to be specifically related to infertility although an in-depth knowledge of genetics and inherited traits and the psychological implications of an incomplete genetic identity was felt to be a bonus. Those having completed a full counselling training through the main professional bodies would, therefore, be fully qualified to provide the appropriate skills needed for an individual, case by case approach to counselling. It was felt that the HFEA might be the first point of contact for those seeking information from the Register and that those handling telephone calls would need good listening skills. Subsequently it was felt that counselling should be provided by professionally qualified counsellors and that people would be seen in these counsellor’s consulting rooms. For donor offspring, particular concerns were expressed about providing counselling within a medical environment. However, for couples receiving infertility treatment in clinics, counselling by nurses was felt to be appropriate. However, the training of nurses engaged to do counselling in clinics would need to address biases related to counselling and the psychology of being a donor offspring and donor anonymity that might exist within that clinic. Whether counselling is provided at the treatment stage for recipients, or at a later stage and elsewhere for donor offspring, the funding of such counselling was felt to be an integral part of the treatment package. It was suggested, therefore that funding could be provided either by the clinics 47 privately or through the NHS, or alternatively through public funding. In addition, it was hoped that outlining potential need for counselling at the treatment stage, might raise awareness about the importance of the psychological implications of using donated egg, sperm and embryos. Finally the groups felt that raising public awareness was an important way of addressing the main psychological implications raised in this report and that the media and school education could be instrumental in raising that awareness. 48 Appendix 2: Suggested Policy and Procedures Counselling & Information Services for Adult Donor Offspring Accessing Non-identifying Information from the HFEA Register 1. The legislative framework 1.1 Section 31 of the Human Fertilisation and Embryology Act 1990 requires the HFEA to keep a Register of information about people who have received regulated treatment or whose gametes have been stored. 1.2 The Register also records all births resulting from treatments using donated gametes or embryos, noting the delivery date and place of birth. 1.3 A person who has attained the age of eighteen may ask the Authority whether the Register shows that they may have been born as a result of gamete or embryo donation. 1.4 They may also ask whether the person that they plan to marry is related to them as a result of treatment services received by their parents. 1.5 The Act makes the same rights available to a person from the age of 16 if intending to marry. 1.6 All applicants must be given a suitable opportunity to receive proper counselling about the implications of compliance with the request. 1.7 The Act allows for Regulations to be made, allowing a donor offspring upon reaching the age of 18, to be given further information held on the Register about the donor 1.8 Regulations cannot require the Authority to give any information as to the identity of the person whose gametes have been used or from whom an embryo has been taken if the gametes or embryos were donated when the person’s anonymity was protected. 2. Initial enquiries 2.1 An applicant may approach the HFEA by telephone or by letter. If the first contact is by telephone they should be asked to follow up their request in writing and enclose a s.a.e. 2.2 Initially basic information should be asked of them in order to trace any record. This will include their name, date of birth, name(s) of parent(s), current address and contact details. 2.3 In the event of an initial enquiry being made in person, the applicant should be seen by a designated member of staff and given an explanation and written information about the procedures for obtaining information. 2.4 Telephone and written enquiries should be acknowledged in writing within one week and information given about where counselling can be offered. They will also be given information about the process and the issues that may be raised in the counselling interview. 49 2.5 The applicant should be asked to bring some identification with them to any interview arranged, e.g. birth certificate, driving licence, identity card or passport. Where possible this should include photographic identification. 2.6 The HFEA will send any records to the chosen counsellor. 2.7 A case file should be opened for this piece of work and the applicant will be informed of this. 3. Interview 3.1 The donor offspring should be contacted immediately by the allocated counsellor to arrange an appointment within one month, whether or not the file or information from the HFEA is available. 3.2 The interview should normally take place in the counsellor’s usual counselling room unless it involves exceptional circumstances, e.g. ill health of donor offspring, incarceration etc. In the case of the donor offspring living an excessive distance from the counsellor’s place of work, some neutral venue at a mutually agreed location should be sought. 3.3 Wherever possible the counsellor will offer at least one preliminary interview before the content of the record is shared. The primary aim of this interview should be to assess the needs, hopes and expectations of the donor offspring and to help them to explore the implications for themselves, their family and any other person who may be affected. This would normally be followed by a second interview when factual information can be given. 3.4 If a preliminary interview is not seen to be appropriate, the donor offspring and counsellor may meet for the first time when the donor offspring’s records are available. 3.5 The counsellor should prepare for the counselling and information-giving interview by making a written summary of the information on record to give to the donor offspring. 4. Areas to be covered in the interview 4.1 Evidence of the identity of the person should be checked. 4.2 During the counselling interview, it is important to identify: • the person’s reasons for seeking information • their level of knowledge about their origins • the information that has been passed to them by their parents or by any other person • their hopes, expectations and needs • their experience of being a donor offspring • whether they have discussed the approach to the Register with their parents and/or other persons • the response of parents or others to their wish for information • their present circumstances • their sources of emotional support. 5. Information to be given 5.1 The information to be provided must comply with the Regulations set out by the HF&E Act. Unless restricted by such Regulations all information on record should be provided by the counsellor. 50 5.2 The written summary should be given at the end of the counselling interview. 5.3 The future needs of the person should be discussed and written information about the availability of on-going counselling, support and information be provided. 6. Recording enquiries and maintaining records 6.1 A record of all referrals must be kept. Reports should be written succinctly and accurately. 6.2 The record should include details of the reasons given for seeking information, the circumstances of the person, relevant history in relation to donor conception and experience of learning about their origins. 6.3 There should also be a record of advice given, on-going counselling offered and any other action taken. 6.4 Records should be kept of all further counselling given. 6.5 The person should be advised of the existence, content and purpose of the records. 51 52 Appendix 3: Legislative and Counselling Provision in Victoria, Australia The Victorian legislation provides donor offspring, recipients, donors and the descendants of donor offspring with rights of access to information. A central register of information relating to all parties to a donor conception and maintained by the statutory regulatory body, the Infertility Treatment Authority (ITA), was initially set up in Victoria on 1 July 1988 following implementation of the Infertility (Medical Procedures) Act 1984. This Act was superseded by the Infertility Treatment Act 1995 that came into force on 1 January 1998. There are two statutory central registers (the 1984 Central Register and the 1995 Central Register) and one voluntary register (the Donor Treatment Procedure Information Register - also referred to as the ‘Voluntary Register’) in Victoria, each with different provisions for accessing information. No charge is made for applications to any of these registers. The 1984 Central Register, set up under the Infertility (Medical Procedures) Act 1984, contains a permanent record of all parties to a donor conception. Non-identifying information on the register may be disclosed. Identifying information may be released, but only with the express consent of the person to whom that information relates. The ITA is required to make ‘reasonable efforts’ to locate any donor whose consent to the release of information is required. The 1995 Central Register, established under the Infertility Treatment Act 1995, permits access to information on the register that identifies the donor to a donor offspring when they reach 18 years of age. This right is unconditional and donors consenting to the use of their gametes for the treatment of another person after 1 January 1998 do so on the basis that identifying information will be made available if requested. Where a request is made for the release of identifying information from the 1984 and 1995 Central Registers, the ITA is required to arrange the necessary search for the individual about whom information is requested. Before identifying information is provided from the 1995 Register, the ITA must advise the donor that such information is to be released and provide information abut the availability of counselling. The amount of non-identifying information concerning donors held by the ITA is less extensive than that kept by the clinic or doctor providing treatment. Where a request is made by a donor offspring for non-identifying information held by a clinic or doctor, this information must be provided in accordance with section 71 of the Infertility Treatment Act 1995. Under the Infertility Treatment Act 1995 (S 82), a Donor Treatment Procedure Information Register was established by the ITA on 8 March 2001. It is commonly known as the ‘Voluntary Register’. This Register allows anyone involved with a donor treatment procedure since 1 July 1988 voluntarily to apply for inclusion in the Register and may be used to provide identifying information to be released to other people to whom they may be biologically linked, a photograph or any other information that may be of interest to anyone else who may be associated with the donor procedure. Information may only be provided with the consent of the person involved. This is the only Register in Victoria that would allow contact to be made between donor-conceived half-siblings. The ITA is expected to take a proactive role, ‘ensur[ing] that every attempt is made to find the donor code relevant to that person’ and ‘us[ing] every opportunity to promote [the Register’s] existence’ (ITA News, March 2001). 53 As no central register existed before 1 July 1988, extension of the Voluntary Register to cover pre- 1988 donor procedures is more problematic. The ITA is currently looking at the possibility of extending the scope of the Register to pre-1988 donor procedures, but effecting any change will require legislative amendment. Any requests for information concerning pre-1988 donor procedures received by the ITA are referred to the clinic providing the treatment. However, in its Annual Report for 2001 the ITA notes that, following publicity in the media concerning donor information, it had received 38 unsolicited applications relating to pre-1998 donor procedures - predominantly from sperm donors who had donated during the 1970s and early 1980s who wanted to ‘ensure that should their offspring wish to contact them, that information could be lodged somewhere’ (ITA Annual Report, 2001, p. 15). Donor Linking Counselling Requirements in Victoria When a donor offspring seeks information about his or her biological origins from either of the statutory registersi, Victorian legislation mandates the provision of counselling (‘donor linking counselling’) about the potential consequences of releasing the information as follows: 1. when application is made for non-identifying information the applicant must be offered counselling 2. when application is made for identifying information the applicant must receive counselling. The information requested will normally be provided at the end of the counselling session. NB. the ITA ‘may waive a requirement.... requiring it to be satisfied that an applicant for information has received counselling if it is satisfied that the applicant is already aware of the substance of the information to be given and that counselling is not appropriate’ (Infertility Treatment Act 1995 S. 81). The Infertility Treatment Act 1995 requires that such counselling must be provided by an ‘Approved Counsellor’. Approval falls to the ITA and it requires all Approved Counsellors to meet each of the following minimum qualifications: 1. approved qualifications in social work, psychology, counselling, psychiatry (other approved tertiary qualifications with a substantial component of counselling) 2. undertake on-going professional development in line with specified service objectivesii 3. meet specified service objectives and requirements Approved Counsellors must also provide evidence of clinical supervision at the initial application for approval and their practice must adhere to appropriate professional and ethical standards. Approved Counsellors are required to provide a minimum of one or two counselling/information sessions, which may include: 1. Discussion with the applicant about the implications and potential consequences of proceeding with an application for information, with the possibility of donor linking, to enable a fully informed decision to be made. 2. Assessing whether there are additional issues that the applicant may need to address or need assistance with which are outside the scope of donor linking counselling that is auspiced by the ITA. 3. Advising about options and potential consequences of the application, including the issues of other stakeholders in the process. 54 4. Consulting, negotiating and/or referring the applicant to other service providers where appropriate (Infertility Treatment Authority Conditions for Approval – Donor Linking – Application by Counsellors November 2001). Where a request has been made for the release of identifying information from either the 1984 or the 1995 Register and where a counsellor is of the opinion that the release of the information at that session may place the applicant in danger, the counsellor may decide not to release the information at that time and should report immediately to the ITA to recommend a course of action. Counsellors in assisted conception units, adoption workers and individuals in private practice have been appointed as Approved Counsellors by the ITA. i The ITA is not required to provide counselling for any applicant to the Voluntary Register. However it does have discretion to offer counselling where it deems this to be appropriate and where an applicant seeks identifying information, the applicant will be provided with details of Approved donor linking counsellors (Infertility Treatment Authority Section 82 Donor Treatment Procedure Information Register: Guidelines and Procedures February 2001) ii Key service objectives are: (1) to provide a high standard of professional service which is relevant and responsive to the needs of individuals applying for information (2) to provide a high standard of professional service which is relevant and responsive to the needs of individuals who have been approached as a result of an application for information (3) to demonstrate an ability to work within the legislative framework of the Infertility Treatment Act 1995 (4) to ensure the applicant has a thorough understanding of the possible implications of any decision to proceed or not to proceed with a request for information and donor linking (5) to assist the applicant to make an informed decision about whether or not to proceed with a request for either non-identifying information or identifying information about a genetic parent/child (6) to assess the need for further long-term continuing intervention for that person or family (7) to monitor the issues which arise for applicants and the outcomes of donor linking to ensure that these issues are understood and addressed by the appropriate authority (Infertility Treatment Authority Conditions for Approval – Donor Linking – Application by Counsellors November 2001) 55 56 Appendix 4: Protocols from Victoria, Australia 1. Protocol for Facilitating Contact between Donor Conceived People and Donors (Developed by the Victorian Counsellors Group in 2001) Guiding Principles The client (person seeking information): • should be provided with clear information; • should be offered the opportunity for discussion; • should be treated with respect; • should be assisted with the process and in their adjustment to the outcome; • should have choice and should have those choices clearly spelt out; • should make their own decisions about what they want; • should have control over the pace of the steps involved. The counsellor: • should remain neutral; • should not become the advocate for one party; • should take on the role of mediator; • should support the principle that people have a right to make contact with genetic offspring or donor parents. Procedure 1. Initial Inquiry The counsellor attached to the ART clinic is the most appropriate person to deal with these cases. All initial inquiries should be referred to the counsellor. An initial inquiry may be taken by telephone. At this time the needs of the client should be established. If their needs are not clear an appointment for counselling should be offered. A search of clinic records should be made to establish whether there are any records. For some cases there will not be. The client should be advised and counselling should be offered. 2. Non-identifying information If non-identifying information is requested this should be provided by the counsellor in writing after searching appropriate records. Follow up counselling should be offered. 3. Identifying information If the request is for identifying information, an appointment for counselling should be arranged before any further steps are taken. The counselling should address the following: • clarification of the issues for that person; • their needs and expectations; • other life issues; • possible outcomes of pursuing the request; • potential difficulties; • possible expectations of the other party; 57 • informed decision making; • ensure decision is based on reality; • helping the client to develop a clear understanding of their needs and motivations. If it has been decided to proceed with the request, the following steps should be followed: 1. The request should be received in writing. 2. A search is initiated. The last known address of the person is used and an agency may be asked to trace the person. 3. If not located the client is advised and further counselling may be necessary. 4. If located the counsellor should adopt the role of mediator. 5. Before any attempt is made to make contact, establish whether the client still wishes to proceed. Some clients may have second thoughts as the possibility of contact moves closer to reality. 6. The client should provide in writing the information that they want communicated when contact is made. The person contacted (the subject) will question the counsellor about the inquirer (e.g. needs, motivations). The only information that should be passed on is that which was given by the client. Also establish what the client wants the counsellor to ask the subject. 7. Write a letter to the subject requesting that they contact the counsellor. 8. The letter should be sent by person-to-person registered mail and should contain information that will enable the person to recognise what it is about. However it should not spell out all the details. 9. If the letter is received but no contact is made a further letter should be sent requesting the subject to communicate their wishes. If there is still no answer no further attempt at communication should be made. 10. When contact is made information may be passed on to the subject as authorised by the client. Information may also be gained to pass on to the client. The subject should be invited to attend counselling. No identifying information should be exchanged without prior counselling of both parties. 11. The counselling should aim to clarify the subject’s feelings, thoughts, expectations and wishes in relation to the inquiry. What information would they be prepared to give, would they be prepared to meet, would they be prepared to exchange letters etc? 12. The counsellor continues to act as mediator between the two parties until an agreement is reached. This should happen as soon as possible so the counsellor can step out of the mediating role and the clients can establish their own relationship independently. 13. Further counselling may be required by either party depending on what has happened and their emotional reactions. The needs of others in the immediate families for further counselling should also be considered. It is likely that issues that were salient at the time of the treatment or donation will resurface and will need to be dealt with (e.g. marital conflict, dealing with infertility, grief etc.) 58 2. Donor Linkage: Counselling Issues to be explored when adult donor offspring seeks information of their donor. (Victorian Counsellors Group 1999) • stated reason for the request and the offspring’s expectations • identification of the particular needs of the offspring in relation to the request • positioning request in terms of when and how offspring learnt of their donor origins, and impact this may have had on request for information • exploration of the possible outcomes of pursuing this request including: • impact on parents – offspring’s understanding of the impact of the infertility and the openness of their parents re telling others i.e. how threatening will this request be and what will be the impact on relationships with parents • impact on donor – exploration of the donor’s expectations and needs and how these might be managed in the context of his current life circumstances. Impact on donor’s spouse (who may not have consented to the donation) • impact on genetic half-siblings - the offspring’s request for information may impact on the donor’s children and the offspring’s siblings who may have different needs which this request may trigger • impact on self – exploration of impact on knowledge of self, reality versus fantasy, the redefinition of self once donor is identified. exploration of negative outcome including impact of rejection if donor not receptive to inquiry, if donor is deceased or cannot be located or if the donor does not realise expectations of the fantasy. Importance to offspring of also learning of potential half siblings, including significance of other offspring having made similar applications 3. Donor Linking Guidelines 2001: Melbourne IVF 1. Initial telephone contact – ascertain the following re donor conceived person: • Full name • Date of birth • Contact details • Names and dates of birth of parents when they were having treatment • What information they already have about donor, if any • Make appointment time 2. Look up old file and computer to determine who the donor is, what we know about them, and how many children were conceived with their sperm. Also look up parents’ file for family background. 3. Interview with donor conceived person: • Personal and family background – including nature of relationships with parents • When, how and by whom they were told • Current social and emotional situation • Who else knows of donor conception and that they are seeking further information • Provide non-identifying information on donor and re genetic half-siblings (number, ages, genders) if they want this • Explain central and voluntary registers (place notes on person’s file and donor’s file if person wishes future contact with half-siblings, also encour