Reproductive BioMedicine Online (2011) 23, 642– 651
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SYMPOSIUM: CROSS-BORDER REPRODUCTIVE CARE ARTICLE
CBRC and psychosocial counselling: assessing needs and developing an ethical framework for practice Eric Blyth *, Petra Thorn, Tewes Wischmann University of Huddersfield, School of Human and Health Sciences, Queensgate, Huddersfield HD1 3DH, United Kingdom * Corresponding author. E-mail address:
[email protected] (E Blyth). Eric Blyth is professor of social work at the University of Huddersfield and visiting professor of social work at Hong Kong Polytechnic University. Petra Thorn: Practice for Family Therapy, Moerfelden, Germany. Tewes Wischmann: Institute for Medical Psychology, Heidelberg University, Heidelberg, Germany.
Abstract Encountering infertility and involuntary childlessness and undergoing infertility treatment are acknowledged as stressful
experiences that impact on individuals’ psychological and emotional health – and for which access to psychosocial counselling by a skilled mental health professional may be beneficial. Evidence of patients’, gamete donors’ and surrogates’ experiences indicates that utilization of infertility treatment in another country may not only exacerbate these psychosocial adversities, but may also pose additional risks to the psychological or physical health of participants, thus further emphasizing the need for competent psychosocial counselling services in cross-border reproductive care. However, this is a largely neglected topic in recent discussions of both CBRC itself and of infertility counselling practice. This paper extends the previous work undertaken by two of the authors to begin to map out practice issues within an ethical framework for counsellors when working with clients, donors, surrogates, individuals conceived following infertility treatment and existing children in clients’, donor’s and surrogates’ families where cross-border reproductive treatment is considered or undertaken. RBMOnline ª 2011, Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved. KEYWORDS: assisted-conception offspring, cross-border reproductive treatment, donors, patients, psychosocial counselling, surrogates
Introduction This paper highlights an important, but so far largely neglected, component of cross-border reproductive care (CBRC): the need for competent psychosocial counselling services.
In keeping with the focus of this Symposium issue, this paper uses the term ‘cross-border reproductive care’. However our work – and that of others – suggests that the benevolent image that ‘care’ conveys is not always present in the experiences of patients seeking fertility services in a country other than their own, donors, surrogates or the
1472-6483/$ - see front matter ª 2011, Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.rbmo.2011.07.009
CBRC and psychosocial counselling children born as a result of the procedures undertaken. Our preference is for the term ‘cross-border reproductive services’ which we consider to be less value laden than ‘cross-border reproductive care’. With the exception of Thorn and Wischmann (2010), who specifically refer to work with German clients who have undertaken or are seeking treatment in another country, no publication has previously articulated specific issues that need to be considered by infertility counsellors when working with clients who are contemplating or who have undertaken reproductive services in another country (or in another state in federated nations). This paper builds on and extends these authors’ earlier work to outline the need for such services and to begin to map out an ethical framework for psychosocial counselling practice in CBRC for professionals in both home (i.e. the country of residence from which CBRC is sought, that may or may not, also be the country of which the individual is a citizen) and destination countries. It is widely accepted that undertaking infertility treatment is often stressful, as it adds to existing pressures on individuals and couples experiencing involuntary childlessness (Cousineau and Domar, 2007). This has generated an acknowledgement of the value of psychosocial counselling as an important adjunct to medical and technical services, an importance that is reflected in mandatory infertility counselling requirements in some jurisdictions and prescriptions for the qualifications of professionals providing counselling. For example, New Zealand and most Australian states have enacted legislation and regulations concerning infertility counselling. Although there are some variations between different jurisdictions, a common factor to all is the remit of the Fertility Society of Australia (FSA), which accredits fertility clinics in both countries. Through its Reproductive Technology Accreditation Committee, FSA requires accredited clinics to ensure access to counselling and recipients of donated gametes or embryos and their partner – and donors and their partner (if any) – to meet with an infertility counsellor prior to the commencement of any donation procedure. All counsellors hired by clinics must be members of the Australian and New Zealand Infertility Counsellors Association (ANZICA) and meet ANZICA’s eligibility requirements, i.e. to: (i) possess a minimum 4 year tertiary academic qualification from a recognized institution and: (a) be registered to practise as a psychologist in a state of Australia or in New Zealand; or (b) be a member of (or be eligible for membership of) the Australian Association of Social Workers or the New Zealand Association of Social Workers; or (c) be registered to practise as a psychiatrist in a state of Australia or in New Zealand; and (ii) be counselling clients who are concerned about issues related to infertility; and (iii) possess at least 2 years full-time or equivalent supervised postgraduate counselling experience; and (iv) demonstrate current knowledge of infertility and infertility treatments.
643 In the UK, under provisions of the Human Fertilisation and Embryology Act 1990, all individuals seeking a licensed fertility treatment – and donors of gametes or embryos used in such treatments, non-medical fertility services or research – must be offered a ‘suitable opportunity’ to receive ‘proper’ counselling (Schedule 3(3)(1)(a)). Guidelines issued by the UK’s statutory regulatory body, the Human Fertilisation and Embryology Authority, specify that counselling should be provided only by a qualified counsellor who: (i) possesses specialist competence in infertility counselling; and (ii) holds a recognized counselling, clinical psychology, counselling psychology or psychotherapy qualification at least to the level of diploma of higher education; and (iii) is an accredited member of, or working towards accredited membership of, a recognized professional counselling body that has a complaints/disciplinary procedure; and (iv) agrees to abide by an appropriate code of conduct or ethics (Human Fertilisation and Embryology Authority, 2009, 2.12–2.13).
In other jurisdictions where the concept of infertility counselling is well developed, similar emphasis is placed on ensuring high quality standards (Covington and Hammer Burns, 2006). On the other hand, while guidelines for the provision of infertility counselling as well as qualification guidelines for infertility counsellors have been established in several jurisdictions, most have minimal or no guidance for infertility counselling (Blyth, 2011). Counselling is referred to only tangentially (and incompletely) in the International Federation of Fertility Societies’ triennial global compendium of national rules and regulations for assisted reproductive services. In the most recent report (Jones et al., 2011), providing information for 105 countries, the following references only are made to counselling: in Croatia, Ireland and the Netherlands in respect of oocyte donation; a ‘few’ (unspecified) jurisdictions in regard to embryo donation; Nepal as regards sperm donation; Belgium in respect of ‘welfare of the child’ requirements; and general references to counselling for IVF surrogacy. As is elaborated upon below, undertaking fertility services in another country or jurisdiction almost invariably adds a further level of practical and emotional complexity to the pressures already noted (Blyth, 2010; Infertility Network UK, 2008; Thorn and Dill, 2010; Thorn and Wischmann, 2010). Psychosocial counselling, therefore, can play a key role in raising awareness of the complexity of carrying out infertility treatment abroad, providing basic knowledge about infertility treatment in other countries to facilitate informed consent and exploring psychological and social implications, especially where an anonymous or identifiable donor or a surrogate are used, as these also raise ethical and legal challenges. At the present time, however, there has been scarcely a reference to counselling in the existing literature and research. Where any such reference is made, it is to highly idiosyncratic models of ‘counselling’. For example, Pande (this volume) notes the role of the counsellor in
644 the surrogacy programme in Anand, India, who doubles up as matron of the hostel in which the surrogates reside during their confinement and who describes her task as one of providing surveillance of the surrogates, to ‘make sure that the clients don’t get fooled’. Such a model sits no more easily with the arrangements for counselling previously described than the view of counselling promoted by the ESHRE Task Force on Ethics and Law (discussed in more detail below). For this reason, the present paper focuses on issues relating to donor procedures and surrogacy undertaken in association with CBRC.
Home and destination countries for CBRC The reasons for which fertility patients seek CBRC have been articulated elsewhere (Blyth, 2010; Inhorn and Patrizio, 2009; Thorn, 2008) and for reasons of space they will not be repeated here. However, limited systematic data are currently available concerning utilization of CBRC, although some recently published studies and others in progress have begun to indicate from where patients are travelling, their destinations and the services they are seeking (Blyth, 2010; Haase, 2009; Hughes and DeJean, 2010; Infertility Network UK, 2008; Inhorn and Patrizio, 2009; Nygren et al., 2010; Pennings et al., 2009; Shenfield et al., 2010; Smith et al., 2010; Whittaker, 2009). Fewer studies document the experiences of donors or surrogates or outcomes for children conceived as a result of CBRC (see McKelvey et al., 2009; Pande, 2009 for rare exceptions). Collectively, these studies illustrate that: (i) patients travel from more or less anywhere to pretty much anywhere else in the world for reproductive services – although not all destination countries have reputations for high-quality service provision, so more sophisticated analysis of the reasons for patient travel and their choice of destination and service is warranted; (ii) a number of countries are both home and destination countries; (iii) patients generally recount a relatively high level of satisfaction with services they have received, including the availability of donors, shorter waiting times, lower costs, and the ability to receive treatment in a country where they are familiar with the language and culture. However, the clinical experience of the authors (PT, TW), with German patients who have experienced such services suggests that their questions regarding recruitment strategies for donors or their financial compensation are often answered evasively, and counselling, when requested, is seldom available. Currently available evidence regarding patients’ use of CBRC indicates some potential trends (Table 1). Notably (and hardly surprisingly), geographical proximity between home and destination countries is strongly evident. However, the current knowledge base is insufficiently robust to indicate whether these are anything more (or less) than artefacts of the study design (e.g. reflecting the specific services or origin/destination countries studied and/or
E Blyth et al. highlighting practices developed by dominant service providers/entrepreneurs). At the same time, current data do not reflect the cross-border movements of donors, surrogates, gametes or embryos. In addition to the relatively piecemeal and serendipitous way in which data are being built up, fundamental characteristics of CBRC will continue to impact the ability to systematically generate knowledge. Recourse to CBRC may be driven by evasion of restrictive laws in patients’ home countries or other motives that may be perceived as ethically dubious, and some services that are obtained may be either illegal or disapproved of in the countries in which they are provided. It is unlikely, therefore, that individuals participating in such practices will readily engage in research studies and institutional review boards might well baulk at approving research conducted surreptitiously. Such constraints have limited the expeditious development of an inclusive understanding and conceptualization of the CBRC phenomenon and, until relatively recently, knowledge of these particular facets of CBRC has been derived largely from reports provided by investigative journalists – often posing as fertility patients (e.g. Abrams, 2006; Barnett and Smith, 2006; Foggo and Newell, 2006; Jeska, 2008; McBeth, 2008; Schindele, 2009) – and anecdotal accounts to be found on patient support websites and personal blogs. However, as the reports by several anthropologists in this volume show, some academic entre ´e into the less easily accessible areas of reproductive services is now being achieved.
Issues in CBRC provision for patients, donors, surrogates and offspring As indicated above, reports of patients’ experiences are mixed. This must be borne in mind in setting the context for the following discussion, which, necessarily, focuses on actual or potential problems that need to be taken into account in formulating a coherent and comprehensive counselling and mental health strategy for the provision of CBRC. Many of the issues that have been identified through research, the media or anecdotal accounts relate specifically to the lack of regulation, oversight and safeguards for patients, donors, surrogates and offspring, and lower employment and donor/surrogate recruitment costs, which enable services to be provided competitively and are characteristic of several popular destination countries. Indeed, these (together with a good tourist and travel infrastructure and use of English as a common language) are often precisely what facilitate the availability of services.
Issues relating to patients’ experiences and patient care CBRC involves additional practicalities associated with travel, in particular synchronizing timing of travel with treatment cycles, especially where treatment plans may change at short notice, for instance because of complications with visa applications (Blyth, 2010; Chung, 2006). Patients sometimes encounter higher than expected costs of services (Chung, 2006; Ferraretti et al., 2010; Infertility
CBRC and psychosocial counselling Table 1
645
Cross-border reproductive care: home and destination countries and services.
Home country
Destination country
Service(s)
Australia Canada Denmark Egypt France Germany Hungary India
Thailand USA Baltic States, Czech Republic, Greece, Russia, Spain Spain and other European countries Belgium Czech Republic, Spain USA Europe, USA, United Arab Emirates Thailand, USA Romania Austria, Belgium, Czech Republic, Greece, Slovenia, Spain, Switzerland, UK USA Belgium Czech Republic Jordan Belgium Denmark Russia, Spain Denmark Baltic States, Finland, Russia Austria Eastern Europe, Spain Czech Republic, Spain India
Sex selection Donor oocytes Donor oocytes Donor oocytes Donor spermatozoa Donor oocytes Surrogacy Standard IVF Sex selection Donor oocytes Donor oocytes, donor spermatozoa, embryo cryopreservation, PGD All services ICSI-TESE Donor oocytes Sex selection Donor spermatozoa Donor spermatozoa Donor oocytes Donor spermatozoa Donor oocytes Standard IVF Donor oocytes Donor oocytes Surrogacy
Israel Italy Japan Macedonia Middle East Netherlands Norway Portugal Sweden Switzerland UK USA
Sources: Bergman (2010), Blyth (2010), Hughes and DeJean (2010), Infertility Network UK (2008), Inhorn and Shrivastav (2010), Kilani et al. (2010), Nahman (2010), Shenfield et al. (2010), Smerdon (2008), Whittaker (2011). ICSI = intracytoplasmic sperm injection; PGD = preimplantation genetic diagnosis; TESE = testicular sperm extraction.
Network UK, 2008; Shenfield et al., 2010), although some patients comment that services in their destination country are cheaper than in their home country and this is one of the key reasons why CBRC is contemplated in the first place. Some clinics in destination countries apply inferior safety and quality levels (Ferraretti et al., 2010; Hughes and DeJean, 2010; Pennings, 2006a,b). Some clinics in destination countries show insufficient respect for patients’ rights (Pennings, 2006a). Some clinics in destination countries have either no counselling facilities or counselling services that are inadequate (Blyth, 2010; Ferraretti et al., 2010; Infertility Network UK, 2008; Pennings, 2006a; Thorn and Dill, 2010). Success rates in some clinics in destination countries are lower than expected (Pennings, 2006b). Some destination countries do not offer adequate access to malpractice law (Ferraretti et al., 2010; Pennings, 2006b). Patients have also been reported to experience difficulties in accessing, absorbing and evaluating information about services, in particular the volume of unfiltered information on the internet (Blyth, 2010; Shenfield et al., 2010). Assistance in making arrangements to receive services in destination countries is infrequently provided (Blyth, 2010; Infertility Network UK, 2008; Shenfield et al., 2010). Patients sometimes encounter language problems, in particular when either they or professionals do not share a common language sufficiently proficiently (Infertility Network UK, 2008; Pennings et al., 2009).
An overwhelming impression from existing studies of patients’ experiences of CBRC is that most make their own arrangements with minimal support and liaison from clinics in their home country (Blyth, 2010; Infertility Network UK, 2008), although the clinic-based study by Shenfield et al. (2010) shows that home-country clinic involvement in arrangements for CBRC varies between countries. What is becoming apparent is that, in some countries at least, specific partnerships are being established between clinics in different countries to facilitate the provision of CBRC. In a survey conducted by the Human Fertilisation and Embryology Authority (2010), of 30 UK clinics responding, 11 reported that they provided no support to patients considering treatment in another country, four provided information about clinics in destination countries, two referred patients to clinics in destination countries with which the clinic had no association, six referred patients to clinics in destination countries with which the clinic had an association and seven clinics participated in a ‘joint care arrangement’ with a clinic in a destination country.
Issues relating to donors’ and surrogates’ experiences and their care Very little information regarding the experiences of donors and surrogates engaged in CBRC is available as the result of
646 academic scholarship. Pande’s ethnographic studies of Indian surrogates (2009 and this volume) provide a rare example. Common characteristics shared by young women who act as oocyte donors or surrogates for CBRC illustrate their exposure to risk of exploitation in the absence of the safeguards noted above: they are primarily poor, living in economically disadvantaged countries and are either students or poorly educated and in low-paying jobs if they are in employment at all. Inter-related, specific issues that stem from this are: (i) the levels of fees paid; (ii) the implications of these for informed consent given by donors and surrogates; and (iii) the provision of care following donation or – in the case of a surrogacy arrangement – delivery of a child. On the one hand, fees offered to surrogates and donors are low compared with fees payable in the recipients’ home country (in those countries where payment of fees is permitted and not prohibited). On the other hand, relative to income levels in the destination country, fees offered may be at such a high level that they constitute undue financial inducement and encourage prospective surrogates or donors to discount the physical, emotional and social risks, thus compromising their consent. Abrams (2006) recounts the experience of Alina Ionescu, an 18-year-old Romanian mattress factory worker earning the equivalent of £55 a month, who was saving to get married and who agreed to ‘donate’ her oocytes for a foreign recipient in return for the equivalent of 3 months’ wages. However, the procedure left her infertile and the clinic which had recruited her showed no interest in offering her post-donation medical care. Her case was subsequently taken up by a Romanian civil rights lawyer, prompting the European Parliament to adopt a resolution to ban trade of human cells and embryos (European Parliament, 2005). Indian surrogates are paid US$3000–5000, the equivalent to about 10 years’ family income for rural Indians (Pande, 2009). To put this in perspective, gross national income per head of population in India was US$1180 in 2009, while that for the USA was US$47,240 (World Bank, 2009). However, claims that Indian surrogates are exploited are contested and Haworth (2011, p. 6) cites one Indian surrogate as stating: ‘This [surrogacy] is not exploitation. Crushing glass for 15 hours a day is exploitation’.
Issues relating to outcomes for, and experiences of, offspring Much as for donors and surrogates, there is hardly any empirical evidence that relates to outcomes for – much less the experiences of – offspring conceived as result of CBRC. McKelvey et al. (2009), reporting a study that highlights the cost to the UK’s National Health Service of CBRC that results from transfer of a greater number of embryos than is permitted in the UK, nevertheless draw attention to the adverse health implications of higher-order multiple pregnancy and higher-order multiple birth both for mothers and their infants. Problems regarding the child’s legal status – including rights to nationality – have arisen in several high-profile cases involving foreigners using Indian surrogates. In 2008, Manji Yamada was born following a surrogacy arrangement involving a Japanese couple, who used the husband’s spermtozoa and a donor oocyte to create an
E Blyth et al. embryo that was carried to term by an Indian surrogate. Before Manji’s birth, the Japanese couple separated and divorced. The sole adult who wanted Manji was her father. However, since Indian law neither recognized him as Manji’s father, nor – as a single man following his divorce – permitted him to adopt her, he was not allowed to take her back to Japan. The Indian authorities also refused to issue Manji a birth certificate because of her ambiguous parentage under Indian law. This impasse was eventually resolved when Manji’s paternal grandmother was permitted to take her to Japan (The Hindu, 2008). Similar cases were reported in 2010 and 2011. In one instance, German parents had used the services of an Indian surrogate using their own gametes. In the second case, a single Norwegian woman had used oocytes from an Indian donor and semen from a Scandinavian donor to create embryos that were implanted into an Indian surrogate, who subsequently bore twins. The incompatibility of German and Indian as well as Norwegian and Indian legislation made it difficult to determine the children’s nationality in both cases and, thus, they were refused to enter the home country of their parents. After 2 years, the German children were granted permission by the German embassy to travel home with their parents, although they were not entitled to German citizenship (Spiewak, 2010). The Norwegian mother and her twins remain in India (Roy, 2010; S. Roy, personal communication October 2010). In a third case, also involving a German couple using an Indian surrogate to conceive a child with their own gametes, a German court also ruled that the child was not entitled to German citizenship (The Local, 2011). Patient support groups have also reported anecdotally of concerns of parents who have undergone a successful oocyte donor procedure abroad, but where the child has skin colouring suggesting that her or his donor was not of the ethnic characteristics indicated or promised by the clinic (Merricks, 2007). Yet another group of offspring conceived as a result of CBRC whose welfare might be considered compromised are those whose parents reside in a jurisdiction that requires gamete or embryo donors to agree to the disclosure of their identity to their offspring, but who have undergone donor conception in a jurisdiction where donor anonymity is protected and no provisions exist for offspring to learn the identity of their donor (or donors in the case of embryo donation). Of course it is acknowledged that some philosophers would argue that the child conceived using the gametes of an anonymous donor is a different child to the one conceived using the gametes of an identifiable donor, so such a comparison is invalid (Bennett and Harris, 2001; Parfit, 1987). Nevertheless, the point here is that such practices result in the birth of children whose welfare, as defined by some individuals, professional groups and the legislation in some jurisdictions, is necessarily compromised in this way. A final issue to be highlighted is the cultural/ethnic heritage of children conceived following oocyte donation undertaken through CBRC. In inter-country adoption, racial, ethnic and cultural awareness have been found to be essential ingredients for individuals’ successful identity formation (Triseliotis, 2000). There is little evidence either from formal research studies or from clinical practice that this issue is considered at all by those providing services for an international clientele, although it is highly likely that similar
CBRC and psychosocial counselling issues may well apply to offspring conceived following reproductive procedures whose genetic and social parents may be of different races and or cultures and consideration of these is essential to ensure individual and family wellbeing.
Counselling and CBRC Little specific practice guidance exists for counsellors regarding CBRC. Apart from recently published guidelines from the German Society for Fertility Counselling (BKiD) (Thorn and Wischmann, 2010), the only existing position statement explicitly referring to counselling and CBRC is that published by the ESHRE Task Force on Ethics and Law (Pennings et al., 2008). As noted above, its reference is brief and one that is unlikely to be considered adequate by counsellors themselves: ‘When a physician refers patients to centres abroad, he or she should also provide counselling in order to make sure that they know what will happen, what kind of questions they should ask, etc.’ (Pennings et al., 2008: p. 2183). However, the Task Force also mentions – although not in any detail – the need for clinics to ensure the provision of psychological counselling. Since, apart from this acknowledgement of the involvement of other professionals, the sole professional to which the ESHRE report refers is the physician, it is not clear whether the Task Force intends its endorsement of civil disobedience and evasion of the law (as expounded further in its report) to extend to other professionals working in reproductive services. While one would laud any stand taken against unjust laws, to do so only on the basis ‘of guarantee[ing] safe and effective treatments’ to patients (Pennings et al., 2008: p. 2184) and ‘tak[ing] into consideration’ the ‘safety, efficacy and welfare of the patient and the future child’ (Pennings et al., 2008: p. 2182) – whilst paying scant regard to the potential exploitation of donors and surrogates – is insufficiently grounded in notions of social justice and human rights to recommend itself to a professional who is committed to responsible and ethical practice. ESHRE has built on this, through publication by its Task Force on CBRC, comprising four fertility clinicians and one ethicist, of a Good practice guide for cross-border reproductive care for centres and practitioners that provides guidance for centres and physicians providing fertility treatment to foreign patients (Shenfield et al., 2011). However, its specific reference to psychosocial counselling is again modest, identifying the need for foreign patients to receive ‘the same information, counselling and psychological support’ as is provided for domestic patients and in a language that they understand. It also states that foreign donors should receive similar care to that provided for patients and domestic donors. At the present time, national infertility counselling organizations are known to exist in Argentina, Australia and New Zealand (a single association for both countries), Belgium, Brazil, Canada, Germany, Japan, the Netherlands, the Republic of Ireland, Spain, Switzerland, the UK and the USA. These are at varying stages of development and of considerably different sizes as regards membership although, given the nature of the professional specialism, none are numerically large organizations (Blyth, 2011). Given that there is currently very limited specific guidance and comment on
647 CBRC for counsellors, this paper draws underlying statements provided by a number of counselling organizations and related professional bodies to help inform the development of an ethical framework for counselling practice in CBRC, which include (but are not restricted to) the following organizations.
International Infertility Counseling Organization (IICO) Regarding CBRC, the IICO bylaws promote a comprehensive and ethical approach to the care of people affected by fertility issues, to define quality standards of communicative and counselling interventions within the context of infertility care and to establish global professional standards and practice guidelines for the provision of psychosocial care in the area of infertility care (IICO, 2011: Article II).
International Federation of Social Workers/ International Association of Schools of Social Work (IFSW/IASSW) According to the IFSW/IASSW, ‘The social work profession promotes social change, problem solving in human relationships and the empowerment and liberation of people to enhance well-being. Utilising theories of human behaviour and social systems, social work intervenes at the points where people interact with their environments. Principles of human rights and social justice are fundamental to social work’ (International Federation of Social Workers, 2004).
International Federation of Social Workers (IFSW) In 2008, the International Federation of Social Workers adopted a policy on CBRC that extended the application of its ethical standards and of ethical codes of national professional associations ‘to reproductive health care, and to CBRC in particular.’ The policy emphasized: (i) commitment to protecting human rights; (ii) non-commercialization of surrogacy and gamete and embryo procurement; (iii) non-anonymous donation; (iv) protection from exploitation; (iv) self-determination; (v) safety; (vi) ethical practice; and (vii) equality of access (International Federation of Social Workers, 2008).
American Psychological Association (APA) The APA’s Ethical Principles of Psychologists and Code of Conduct (American Psychological Association, 2010) promote principles ‘to guide and inspire psychologists toward the very highest ethical ideals of the profession’, emphasizing: (i) beneficence and nonmaleficence; (ii) fidelity and responsibility; (iii) integrity; (iv) justice; and (v) respect for people’s rights and dignity.
British Association for Counselling and Psychotherapy (BACP) BACP emphasizes the practitioners’ values, principles and personal moral characteristics. Specifically it also endorses
648 practitioners’ commitment to: (i) respecting human rights and dignity; (ii) respecting clients’ autonomy; (iii) protecting client safety; (iv) beneficence and nonmaleficence; (v) fidelity and responsibility; (vi) integrity; and (vii) justice. BACP also alerts practitioners to their ‘personal and professional responsibility to challenge, where appropriate, the incompetence or malpractice of others’ (BACP, 2010). Drawing on these general principles, the following issues regarding counselling in respect of CBRC have been identified. These are based on guidelines issued for German infertility counsellors (Thorn and Wischmann, 2010) and are expanded to cover issues pertaining to post-treatment counselling for patients as well as counselling for donors (Thorn and Wischmann, 2009), offspring, surrogates and any existing children of patients, donors and surrogates. Although counsellors have recourse to existing knowledge and expertise, for example, in the area of third-party reproduction, it has to be noted that counselling in relation to CBRC is an emerging area for which there is currently limited knowledge or expertise (e.g. children conceived using donor gametes from a different cultural background than parents, sex selection, major socioeconomic as well as cultural and ethnic difference between recipients and donors/surrogates, counselling for existing children of patients, donors and surrogates, etc.) and for which counselling concepts remain to be developed. As part of such development with CBRC, different expectations and obligations would apply to counsellors who are: (i) involved in advance of treatment with patients making their own arrangements for treatment in another country where there is no formal assistance or involvement from a clinic or counsellor in their home country; (ii) providing services for a clinic operating a ‘joint care arrangement’ with a clinic in another country. There will be particular implications for ethical practice if the service sought in the destination country is illegal in the home country. At the very least, the counsellor will need to discuss with the patient their views and feelings about law evasion and the potential implications of proceeding with their intended course of action, especially including the possible impact on any child(ren), including existing children. While the ability of counsellors to exclude themselves from any activities on the grounds of conscientious objection is noted, there may well be instances where the counsellor also has a professional responsibility to raise a clinic’s engagement in practices that are illegal or that they consider to be compromised ethically with their colleagues. This emphasizes the importance of counsellors having at least some measure of independence from the clinic and the potential difficulties where such independence is absent; (iii) providing counselling in the home country for patients/clients who have received treatment abroad; (iv) providing counselling in the destination country for clients who have travelled to that country for treatment;
E Blyth et al. (v) providing counselling to donors, surrogates, offspring or existing children in patients’, donor’s or surrogates’ families. Before undertaking treatment in another country, patients need to be given the opportunity to: (i) explore their motivation to seek services in another country and their expectations of these; (ii) be aware of potential language barriers and also cultural differences, especially in providing informed consent to treatment and when signing contracts, and of the need to involve a translator; (iii) be aware of the indications and contraindications for specific treatments, and thus the potential need for medical screening prior to treatment as well as of realistic success rates; (iv) explore the (legal) possibility of undertaking pretreatment in their home country; (v) be aware of the need for full medical documentation of prior assisted reproductive procedures and of all treatment cycles carried out in the destination country in case of medical complications; (vi) be aware of financial reimbursement under the health insurance system of their home country; (vii) explore financial, emotional, psychological and other (e.g. organizational) resources needed to carry out (further) treatment in another country, especially in those cases where they have undergone futile treatment in their home country. This also includes the option to decide against further treatment; (viii) be informed comprehensively about the risks for mothers and children associated with multipleembryo transfer. Further, when undergoing infertility treatment using their own gametes, patients need to: (i) have basic understanding of treatment and costs so that both success rates and costs indicated on the internet can be judged realistically; (ii) be aware of the current state of preimplantation genetic diagnosis (PGD) to avoid unrealistic expectations. When using third party reproduction, patients need to: (i) explore their attitudes towards any information they may have regarding recruitment methods of, financial compensation and medical service for oocyte and sperm donors and surrogates; (ii) have sufficient understanding of costs and compensation for donors and surrogates so that they can judge whether these are reasonable and ethical; (iii) be knowledgeable about the legal implications of reproductive services in the destination country, especially legal parenthood, any rights or obligations exercised by the donor(s)/surrogate and the nationality of the child following surrogacy, and be aware of the need always to seek independent and competent legal advice in advance of undergoing treatment;
CBRC and psychosocial counselling (iv) be aware of emerging thinking among counsellors (and others) and legislation concerning the right of individuals conceived following a third-party reproductive procedure to have access to information about her or his biological origins – including knowledge of the identity of the donor(s) or surrogate and other genetic relatives – and any tensions with such rights generated by practices or legal systems in different jurisdictions. Disclosure/concealment plans should also take into account the possibility that any child may be evidently of a different race or ethnicity to either of her or his parents and the interests of any existing children; (v) be aware of the merits of early disclosure to the child concerning the nature of her or his conception; (vi) reflect on and understand the difference between biological and social parenthood, explore disclosure and be educated how to talk to children about their conception, including in those cases where the donor(s)/surrogate remain(s) anonymous and where the donor(s)/surrogate may be of a different race than the parent(s); (vii) be informed about the nature of any information provided about or by the donor(s)/surrogate and whether offspring have access to this information. Where patients are planning to engage in a reproductive procedure that is considered ethically dubious or is illegal in their home country, they need to consider the implications of this for themselves as future parents and for their intended children and for any existing children in their family. This also includes the need to explore how they may manage adverse or ambivalent feelings, such as shame and regret, and how they will manage disclosure or concealment of their treatment. Finally, patients should be aware that counselling can provide support not only during, but also following, treatment. Counselling for donors and surrogates should: (i) include comprehensive medical information, including potential physical risks caused by hormonal stimulation, oocyte retrieval, oocyte transfer as well as pregnancy and birth; (ii) include information on the limit on the number of offspring and financial compensation; (iii) include relevant legal information, especially as regards legal parentage in all cases of gamete donation and surrogacy; (iv) explore their motivation and attitude towards donation/surrogacy as well as expectations of information about potential offspring and contact; in the case of egg-sharing, donors should also explore their attitudes towards their own treatment being unsuccessful but the recipient’s treatment being successful; (v) explore long-term implications, such as the knowledge of a child born with their assistance, management strategies of their donation/surrogacy within their social network, especially towards their current or future partner and children; (vi) be free of charge;
649 (vii) be available for patients and donors/surrogates at any time before, during and after the treatment is finished and a child is born – or the treatment ended without a child being born; (viii) be available in the native language of the patient and donor(s)/surrogate; (ix) be easily accessible both in the home and the destination country; (x) provide relevant and necessary information regarding psychological, medical and legal issues and help patients as well as donors/surrogates to reflect on and explore all long- and short-term implications of CBRC; (xi) be carried out with respect and empathy for the intentions of patients as well as donors/surrogates. This does not imply that psychosocial professionals should not ask critical questions, but the counselling process should not impose values or the personal views of the counsellor onto clients. If a counsellor cannot accept what the client intends to do, (s)he may withdraw from offering counselling but has an obligation to explain to their client their reasons for withdrawing from counselling, and endeavour to direct the client to another colleague who is willing to help. Counsellors should reflect on their own limits and be transparent in what they offer to clients – for their own sake as well as the client’s
Conclusion CBRC has much potential. It can, and does, help patients to fulfil their family-building aspirations that may have otherwise remained unrealized. It also has the potential to expose to exploitation and impair the welfare of patients, gamete donors, surrogates and the individuals born as a result of the treatment. This paper has highlighted some of the problematic areas, draws attention to the role that psychosocial counselling can – and must – play, and outline issues to be raised by counsellors involved in CBRC. It is our firm conviction that principles such as safety and quality, rightly emphasized by others as well, must be accompanied by attention to fundamental values such as fairness, autonomy and benevolence – for patients, third parties who undergo psychologically stressful and physically invasive procedures to facilitate patients’ family-building aspirations and the individuals thus created. While further research is necessary to enhance knowledge and improve practice, counselling can make an essential contribution to ensure reflective practice in CBRC.
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