Good practice recommendations for information provision for those involved in reproductive donation†.

STUDY QUESTION: What information and support should be offered to donors, intended parents and donor-conceived people, in general and in consideration of the availability of direct-to-consumer genetic testing and matching services? SUMMARY ANSWER: For donors, intended parents and donor-conceived offspring, recommendations are made that cover information needs and informed consent, psychosocial implications and disclosure. WHAT IS KNOWN ALREADY: Trends indicate that the use of donor-assisted conception is growing and guidance is needed to help these recipients/intended parents, the donors and offspring, navigate the rapidly changing environment in which donor-assisted conception takes place. STUDY DESIGN SIZE DURATION: A working group (WG) collaborated on writing recommendations based, where available, on evidence collected from a literature search and expert opinion. Draft recommendations were published for stakeholder review and adapted where relevant based on the comments received. PARTICIPANTS/MATERIALS SETTING METHODS: Papers retrieved from PUBMED were included from 1 January 2014 up to 31 August 2020, focusing on studies published since direct-to-consumer genetic testing has become more widespread and accessible. The current paper is limited to reproductive donation performed in medically assisted reproduction (MAR) centres (and gamete banks): donation outside the medical context was not considered. MAIN RESULTS AND THE ROLE OF CHANCE: In total, 32 recommendations were made for information provision and support to donors, 32 for intended parents and 27 for donor-conceived offspring requesting information/support. LIMITATIONS REASONS FOR CAUTION: The available evidence in the area of reproductive donation is limited and diverse with regards to the context and types of donation. General conclusions and recommendations are largely based on expert opinion and may need to be adapted in light of future research. WIDER IMPLICATIONS OF THE FINDINGS: These recommendations provide guidance to MAR centres and gamete banks on good practice in information provision and support but should also be considered by regulatory bodies and policymakers at a national and international level to guide regulatory and legislative efforts towards the protection of donors and donor-conceived offspring. STUDY FUNDING/COMPETING INTERESTS: The development of this good practice paper was funded by European Society of Human Reproduction and Embryology (ESHRE), covering expenses associated with the WG meetings, the literature searches and dissemination. The WG members did not receive any payment. The authors have no conflicts of interest to declare. DISCLAIMER: This document represents the views of ESHRE, which are the result of consensus between the relevant ESHRE stakeholders and where relevant based on the scientific evidence available at the time of preparation. The recommendations should be used for informational and educational purposes. They should not be interpreted as setting a standard of care, or be deemed inclusive of all proper methods of care nor exclusive of other methods of care reasonably directed to obtaining the same results. They do not replace the need for application of clinical judgement to each individual presentation, nor variations based on locality and facility type. †ESHRE pages content is not externally peer reviewed. The manuscript has been approved by the Executive Committee of ESHRE.

When ART fails: figures, experiences, interventions and a plea for the 'plan B'.

Infertility is perceived by many of those affected by it as one of the most stressful episodes in life. Assisted reproduction can help only some of the people with a desire for children to experience the birth of a biological child. Most people who remain involuntarily childless eventually come to terms with the situation; their psychological well-being is not lastingly affected. However, they should envisage a 'plan B' as early as possible. The prospect of permanent childlessness should not be an unmentionable topic, neither for couples themselves nor for the doctors treating them.

Psychosomatically Oriented Diagnostics and Therapy for Fertility Disorders. Guideline of the DGPFG (S2k-Level, AWMF Registry Number 016/003, December 2019).

Aim The purpose of this official guideline published and coordinated by the German Society for Psychosomatic Gynecology and Obstetrics [Deutsche Gesellschaft für Psychosomatische Frauenheilkunde und Geburtshilfe (DGPFG)] is to provide a consensus-based overview of psychosomatically oriented diagnostic procedures and treatments for fertility disorders by evaluating the relevant literature. Method This S2k guideline was developed using a structured consensus process which included representative members of various professions; the guideline was commissioned by the DGPFG and is based on the 2014 version of the guideline. Recommendations The guideline provides recommendations on psychosomatically oriented diagnostic procedures and treatments for fertility disorders.

Evolving minimum standards in responsible international sperm donor offspring quota.

An international working group was established with the aim of making recommendations on the number of offspring for a sperm donor that should be allowable in cases of international use of his sperm. Considerations from genetic, psychosocial, operational and ethical points of view were debated. For these considerations, it was assumed that current developments in genetic testing and Internet possibilities mean that, now, all donors are potentially identifiable by their offspring, so no distinction was made between anonymous and non-anonymous donation. Genetic considerations did not lead to restrictive limits (indicating that up to 200 offspring or more per donor may be acceptable except in isolated social-minority situations). Psychosocial considerations on the other hand led to proposals of rather restrictive limits (10 families per donor or less). Operational and ethical considerations did not lead to more or less concrete limits per donor, but seemed to lie in-between those resulting from the aforementioned ways of viewing the issue. In the end, no unifying agreed figure could be reached; however the consensus was that the number should never exceed 100 families. The conclusions of the group are summarized in three recommendations.

Emerging models for facilitating contact between people genetically related through donor conception: a preliminary analysis and discussion.

Previous research indicates interest among some donor-conceived people, donors and recipient parents in having contact. Outcomes of such contact appear largely, but not universally, positive. This paper seeks to understand better the characteristics of associated support services. Information gathered using the authors' direct experiences and professional and personal networks in different parts of the world indicates the emergence of four main groupings: (i) publically funded services outside of treatment centers; (ii) services provided by fertility treatment or gamete bank services; (iii) services provided privately by independent psychosocial or legal practitioners; and (4) services organized by offspring and/or recipient parents. Key operational features examined were: (i) who can access such services and when; (ii) what professional standards and funding are in place to provide them; and (iii) how 'matching' and contact processes are managed. Differences appear influenced variously by the needs of those directly affected, local policies, national legislation and the interests of the fertility services which recruit gamete donors and/or deliver donor conception treatments. The paper is intended to inform fuller debate about how best to meet the needs of those seeking information and contact, the implications for the way that fertility treatment and gametes donation services are currently provided and future research needs.

(Male) infertility: what does it mean to men? New evidence from quantitative and qualitative studies.

Scientific knowledge of the emotional repercussions of infertility on men remains limited and has only recently become the focus of social science research. Firstly, the current developments in research on the psychosocial impact of infertility on men through a search of the literature over the last 10 years are outlined in this paper. In the second section, issues raised in pretreatment counselling for men and their partner who consider donor insemination are described as this treatment typically raises many emotional issues. The results of more recent studies with sophisticated methodological design show that the emotional impact of infertility may be nearly balanced, suggesting that men do suffer as well and that they have to be addressed in infertility counselling too. The emotional and clinical aspects of donor insemination support the hypothesis that the emotional repercussions of infertility affect both sexes. In general, male factor infertility seems to be more stigmatized than other infertility diagnoses. Forthcoming studies have to differentiate between the psychological impact of infertility on women and men and their respective abilities to communicate easily about this distress. More studies on infertile men in non-Western societies need to be conducted in order to understand the cultural impact on infertility.

The shift from biological to social fatherhood--counselling men and their partners considering donor insemination.

Men and women are likely to suffer from infertility in similar ways, but gender differences account for different ways in revealing--and not revealing--this emotional pain. The following article is based on this understanding. It seeks to describe counselling tasks and interventions that support men and their partners considering donor insemination. This pre-treatment counselling comprises a range of issues, including the provision of medical and legal information, supporting the grieving process, managing the taboo and stigma surrounding donor insemination, supporting disclosure, and last but not least raising awareness of the needs of the future child. The aim of counselling is to explore the short- and long-term implications and thus facilitate the shift from biological to social fatherhood for men and their partners.

German guidelines for psychosocial counselling in the area of "cross border reproductive services".

An increasing number of couples and individuals with a desire for a child travel abroad for assisted reproductive technologies that are not available in their home country. This trend has been coined "cross border reproductive services" (CBRS), often comprising third party reproduction. In order to respect the welfare of all parties involved, the German Society for Fertility Counselling has developed guidelines for psychosocial counselling in this area in 2010. The following article raises some of the controversies in CBRS and introduces these guidelines.

An introduction to infertility counseling: a guide for mental health and medical professionals.

The practice of infertility counseling delivered by mental health and medical professionals has become more sophisticated and widespread over the past decade. This paper summarizes information presented at the second campus workshop of the Special Interest Group of Psychology and Counseling of the European Society of Human Reproduction and Embryology (ESHRE). This group is dedicated to improving infertility services by creating meaningful connections between mental health and medical professionals. The paper identifies key issues that infertility counselors must consider in their work with couples experiencing infertility. The use of supportive psychosocial interventions and treatments are highlighted. The paper also details the process for choosing the most appropriate type of infertility counseling, and the use of assessment tools that assist in understanding infertility related symptoms. Infertility counselors should also consider gender differences, the impact of infertility on a couple's sexual relationship,and the unique challenges couples face regarding third-party conception. Finally, the paper addresses specific recommendations for infertility counselors in mental health and medical settings.

Cross-border reproductive services--suggestions for ethically based minimum standards of care in Europe.

Cross-border reproductive services (CBRS) is a phenomenon discussed worldwide. The major challenges associated with CBRS are the lack of data on the number of patients travelling for treatment and lack of transparency regarding the quality and safety of treatment procedures, especially in countries that have not yet introduced legislation or binding professional guidelines. This has given rise to practices that range from dubious to irresponsible treatment. Given that pan-European (let alone globally encompassing) legislation or guidelines are unlikely to appear quickly if at all, the authors suggest the implementation of ethically based minimum standards of care to which clinics and service providers can adhere on a voluntary basis. Such minimum standards of care can result in providing infertility treatment that is transparent, accountable and carried out responsibly for all parties involved.

CBRC and psychosocial counselling: assessing needs and developing an ethical framework for practice.

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.

Counselling in infertility: individual, couple and group interventions.

OBJECTIVE: Infertility is considered a biopsychosocial crisis and infertility counselling is recommended as an integral part of a multidisciplinary approach. This article will outline the theoretical background and describe common interventions used in infertility counselling for individuals, couples and in a group setting. METHODS: This article summarizes the proceedings of the first campus workshop of the Special interest group of Psychology and Counselling of the European Society for Human Reproduction and Embryology (ESHRE). RESULTS: Infertility counselling offers the opportunity to explore, discover and clarify ways of living more satisfyingly and resourcefully when fertility impairments have been diagnosed. The Heidelberg Fertility Consultation Service is presented as a framework for individual and couples counselling and highlights important issues in counselling patients. For group work a number of steps to set up a group within an infertility framework are discussed. CONCLUSION: In recent years, infertility counselling has become a specialist form of counselling requiring professional expertise and qualification. Key issues and common interventions are presented to raise awareness for the specific counselling needs of individuals and couples experiencing infertility and undergoing medical treatment. PRACTICE IMPLICATIONS: Mental health professionals new to the field of reproductive technologies as well as those in other areas of mental health counselling clients with fertility disorders can benefit from the topics addressed.

The role of patients' organizations in cross-border reproductive care.

This article provides an overview of cross-border reproductive care from a patient perspective. It outlines motives for seeking reproductive care outside patients' home countries or in other jurisdictions of their home country, describes the role of patients' organizations in general, and concludes by indicating potentials for collaboration between professionals' and patients' organizations.

German guidelines for psychosocial counselling in the area of gamete donation.

Building a family using donated gametes (semen, oocytes or embryos) is associated with specific issues which differ from building a family with gametes from both intended parents, the resulting family comprising separated biological and social parenthood. To respect the welfare of all parties involved, the 'Beratungsnetzwerk Kinderwunsch Deutschland e.V.' (Infertility Counselling Network Germany) has developed guidelines for psychosocial counselling in this area. The following article summarizes international developments and introduces the German guidelines.

[Child and families in the era of reproduction technology--new questions within the scope of child psychiatric treatment]. / Kinder und Familien im Zeitalter der Fortpflanzungstechnologie--neue Fragestellungen im Rahmen der kinderpsychiatrischen Arbeit.

In the last years the number of children born after assisted human reproduction has increased significantly. These technologies have created new challenges for the families as well as for the professionals involved. This article provides an overview of families after in-vitro-fertilisation, intracytoplasmatic sperm injection and donor insemination. The impact of the specific family composition after DI is described in detail. Two case histories indicate that these families may be confronted with psychiatric and child-development issues. Therefore it is helpful to understand the specific issues of these families. Prospective studies will play an important role in order to understand the quality of parent-child-relationship as well as psychological coping strategies, especially in times of crisis.