Department of Public Health and Caring Sciences
Views on embryo donation for reproductive purposes among
couples with experience of cryopreserved embryos
A literature review
Author
Supervisor
Nadine Anttila Zoubaidi
Jennifer Drevin
Thesis in Public Health 30 credits
Examiner
ABSTRACT
Background: Involuntary childlessness and infertility affect a large group of people and WHO calls it a global public health issue. Donated gametes can be used when a pregnancy is not achieved. Embryo donation involves the full genetic material of the donating couple and embryo donation for reproductive purposes are often associated with many emotional, ethical, legal and psychosocial aspects. Aim: The aim of the study was to examine views on embryo donation for reproductive purposes among couples with experience of cryopreserved
embryos. Methods: A literature review was conducted in order to answer the aim. Two databases (PubMed and Web of Science) were used to identify relevant qualitative literature. A smaller search on Google Scholar was also included. Inclusion and exclusion criteria were pre-determined in order to limit which studies to include. Results: A total of 20 studies were included in the results. The results show that there are different views towards the status of the human embryo, views towards the genetic link, information sharing and screening, views towards the selection of recipients, views towards the contact and relationship between donors, recipients and offspring, and views towards the decision-making and whether to donate surplus embryos or not. Conclusion: The multiple understandings of the status of the human embryo emphasizes the complex nature of human embryos and may explain couples’ views on embryo donation for reproductive purposes. It has also the potential to explain what couples decide to do with their surplus embryos. The interests of the receiving couple, the donors, the future child, and the society should continuously be assessed and balanced when society regulates ART and embryo donation.
SAMMANFATTNING
Bakgrund: Ofrivillig barnlöshet och infertilitet påverkar många människor och WHO kallar det ett globalt folkhälsoproblem. Donerade könsceller kan användas när en graviditet inte kan uppnås. Vid embryodonation innebär det att det donerande paret har full genetisk koppling till embryot och embryodonation för reproduktiva syften associeras ofta med många emotionella, etiska, rättsliga och psykosociala aspekter. Syfte: Syftet med studien var att undersöka synen på embryodonation för reproduktiva ändamål hos par med erfarenhet av frysförvarade
embryon. Metod: En allmän litteraturstudie genomfördes för att besvara syftet. Två databaser (PubMed och Web of Science) användes för att identifiera relevanta kvalitativa studier. En mindre sökning utfördes även i Google Scholar. Inklusions- och exklusionskriterier bestämdes i förväg för att begränsa vilka studier som skulle ingå. Resultat: Totalt inkluderades 20
artiklar i resultatet. Resultatet visar att det finns olika uppfattningar om det mänskliga embryots status, om den genetiska kopplingen, informationsutbyte och screening, om synen på kontakt och relationen mellan donatorer, mottagare och avkomma samt synen på
beslutsfattandet och om överskott av embryon ska doneras eller inte. Slutsats: De många uppfattningarna om det mänskliga embryots status betonar den komplexa karaktären hos det mänskliga embryot och kan förklara parens syn på embryodonation för reproduktiva ändamål. Det har också potential att förklara vad par väljer att göra med sina överskott av embryon. Det mottagande parets, donatorernas, det framtida barnets och samhällets intressen bör
kontinuerligt bedömas och balanseras när samhället reglerar ART och embryodonation.
Table of content
1. BACKGROUND ... 1
1.1. Involuntary childlessness and infertility ... 1
1.1.1. Definition of infertility ... 1
1.1.2. Causes of infertility ... 2
1.2. Assisted reproduction ... 2
1.2.1. In vitro fertilization ... 3
1.2.2. Intracytoplasmic sperm injection ... 3
1.2.3. Gamete and embryo donation ... 3
1.2.4. Cryopreservation of gametes ... 4
1.2.5. Providing assisted reproduction in the context of Swedish healthcare ... 4
1.3. Attitudes towards embryo donation ... 6
1.3.1. Attitudes towards embryo donation for research purposes... 7
1.3.2. Attitudes towards embryo donation for reproductive purposes ... 8
1.4. Problem explanation ... 8 1.5. Aim ... 9 2. METHODS ... 9 2.1. Design ... 9 2.2. Search procedure ... 9 2.3. Selection process ... 10
2.3.1. Inclusion and exclusion criteria ... 10
2.3.2. Screening procedure – Title and abstract stage ... 11
2.3.3. Selection process - Full-text stage... 11
2.4. Processing and analysis ... 11
2.4.1. Quality assessment ... 11
2.4.2. Results analysis ... 12
3. RESULTS ... 13
3.1. The status of the human embryo ... 13
3.2. The genetic link ... 14
3.2.1. Genetic screening of donors ... 16
3.3. Selection of recipients ... 16
3.4. Contact and relationship between donors, recipients and offspring ... 18
3.5. The decision-making whether to donate surplus embryos or not ... 19
4. DISCUSSION ... 21
4.1. Result discussion ... 21
4.1.1. The status of the human embryo ... 21
4.1.2. The genetic link ... 22
4.1.3. Selection of recipients ... 24
4.1.4. Contact and relationship between donors, recipients and offspring ... 25
4.1.5. The decision-making whether to donate surplus embryos or not ... 25
4.2. Methods discussion ... 28
4.3. Clinical implications ... 31
4.4. Conclusion ... 31
5. REFERENCES ... 33
Appendix 1. Search matrix ... 41
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1. BACKGROUND
1.1. Involuntary childlessness and infertility
When a couple or a person wish to achieve a pregnancy but have difficulties becoming pregnant, it is called involuntary childlessness. Involuntary childlessness may be a problem, both medically and socially for many people (Borgfeldt, Sjöblom, Strevens &Wangel, 2019). Among those who wish to have children it is estimated that 10-15 percent are involuntary childless for different reasons (Borgfeldt et al., 2019). The cause of involuntary childlessness may be medical causes, such as infertility, or be due to other factors, such as sexuality or lifestyle. Lifestyle may involve the absence of a partner, voluntary or involuntary (Borgfeldt et al., 2019). The term involuntary childlessness can be used differently in different contexts. Sometimes it is used for all the couples or persons who for various reasons are involuntary childless, with or without a medical infertility but sometimes only the concept of infertility is used (Statens medicin-etiska råd [SMER], 2013).
Infertility affect a large group of people worldwide. World health organisation [WHO] has estimated that over ten percent of women and men in reproductive age are inflicted and calls it a global public health issue (WHO, n.d.a.). Reproductive health is in line with the definition of health, defined by WHO (n.d.b.), as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. Infertility can cause emotional and psychological distress in both women and men, and both quality of life and health-related quality of life can be adversely affected (Chachamovich et al., 2010). Infertility may also affect the psychological well-being, marital relationships, sexual relationships, and quality of life (Luk & Loke, 2015). The third Sustainable Development Goal of the United Nations [UN] includes ensuring that all people of reproductive age have access to sexual and reproductive care, including family planning and supporting sexual and reproductive health (UN, n.d.).
1.1.1. Definition of infertility
Infertility is defined as a “disease of the reproductive system” and results in the disability of becoming pregnant after 12 months or more of regular unprotected sexual intercourse (Zegers-Hochschild et al., 2017). Infertility is further categorized as primary and secondary (Zegers-Hochschild et al., 2017). Primary female infertility is defined as not having been diagnosed with a clinical pregnancy and meets the criteria of being infertile. Secondary
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female infertility refers to women who are unable to establish a clinical pregnancy, but who have previously been diagnosed with a clinical pregnancy. Primary and secondary infertility may also apply to men and his participation in the initiation of a pregnancy. Subfertility is a term that should be used interchangeably with infertility (Zegers-Hochschild et al., 2017).
1.1.2. Causes of infertility
Infertility in both women and men can be caused by several factors. In about one third of the cases, the cause of the problem is with the man, in about one third with the woman and in about one third the problem is with both the man and the women, a combination of things or cannot be explained (American Society for Reproductive Medicine [ASRM], n.d.). In women, infertility may be due, among other things, to hormone disorders, endometriosis, over- or underweight, early menopause and injured fallopian tube (Vander Borght & Wyns, 2018). In men, it may be due to blocked vas deferens, impotence, antibodies to their own sperm or reduced sperm quality due to hereditary diseases or malformations. Factors, in both women and men, could also be age, various types of infections, lifestyle related factors, cancer of the reproductive system or destroyed ovarian or testicular tissue due to chemotherapy in cancer treatments (Vander Borght & Wyns, 2018).
1.2. Assisted reproduction
Methods to overcome or treat involuntary childlessness could be adoption or assisted reproduction (Skoog Svanberg & Sydsjö, 2016). There may be various reasons why one or another option is selected, such as regulations, costs or medical factors. Historically, adoption has been the only alternative to form a family but nowadays, there are also several different assisted reproduction options (Hogström et al., 2012).
Medically assisted reproduction can be brought through various interventions, procedures, surgeries and technologies. These could include medical treatments, surgery and intrauterine insemination (Zegers-Hochschild et al., 2017). Assisted reproductive technologies [ART] includes all interventions that include the in vitro handling of both human oocytes, sperm or of embryos. This includes in vitro fertilization [IVF], embryo transfer [ET], intracytoplasmic sperm injection [ICSI], gamete and embryo cryopreservation and gamete and embryo
donation (Zegers-Hochschild et al., 2017). Fertility treatments could be complex, and each treatment cycle consists of several steps. If one of the steps is incorrectly applied, the stakes are high as conception may not occur (Farquhar & Marjoribanks, 2018).
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1.2.1. In vitro fertilization
About half of all people with infertility problems use ART as an alternative to become pregnant and the most common and effective treatment is IVF (Borgfeldt et al., 2019). The first child to be born with IVF was born in 1978 and IVF technology has developed
considerable since. IVF is offered to a broader group of patients and treatments have been significantly simplified (Nationella kvalitetsregistret för assisterad befruktning [Q-IVF], 2019). Globally, approximately five million children have been born as a result of IVF (WHO, n.d.a.). In Sweden, the number of treatments increases every year and results in about 20 000 conceived pregnancies yearly (Q-IVF, 2019).
IVF means that oocytes and sperm are taken out of the bodies and fertilization takes place in laboratory conditions (Borgfeldt et al., 2019). Oocytes are collected from the follicles of the ovary and sperm is collected from the man. The oocytes and sperm are cultivated in a special incubator in which the temperature, humidity and gas content are carefully controlled to simulate the conditions in the female reproductive organs. Oocytes and sperm are brought together in a test tube and after two to five days the best developed oocyte, an embryo, is brought back to the woman’s uterus. This procedure is called ET. The remaining good quality embryos are often cryopreserved, frozen, for later occasions (Borgfeldt et al., 2019).
1.2.2. Intracytoplasmic sperm injection
ICSI accounts for about half of all IVF treatments and is used when a sperm does not manage to fertilize the oocyte through a normal IVF, when the sperm count of the sperm sample is very low or when the motility of the sperm is particularly poor. For ICSI, oocytes are collected just as for IVF, but a sperm will be entered manually with microinjection to an oocyte with the intention to fertilize it. Just as for IVF, the developed embryo is ready to be used for fertilization after two to five days (Borgfeldt et al., 2019). Both, IVF and ICSI treatments could consist of both fresh and frozen gametes (Borgfeldt et al., 2019). Most performed treatments in Sweden are done with the couples’ own gametes but about five percent are done with donated gametes (SMER, 2013; Q-IVF, 2019).
1.2.3. Gamete and embryo donation
When a pregnancy is not achieved from infertility treatments or due to problems with the own oocytes or sperm, donated gametes can be used. When someone other than the individual or the couple is part of the process of reproduction it is called third party reproduction (ASRM,
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2017). This includes using donated sperm, donated oocytes or donated embryos. Embryo donation, unlike oocyte or sperm donation, involves the full genetic material of the donating couple, and not only the genetic material from one individual (SMER, 2013).
1.2.4. Cryopreservation of gametes
Couples undergoing ART, might produce more embryos than needed during a treatment cycle. In these cases, the couples can cryopreserve their remaining good quality embryos for later occasions (ASRM, 2017). In Sweden it is allowed to cryopreserve embryos for ten years and when the maximum storage time approaches, the couples need to decide what to do with their remaining embryos (Socialdepartementet, 2018). It is also possible to cryopreserve sperm and unfertilized oocytes. The cryopreservation does not compromise reproductive outcomes such as fertilization rates, embryo quality and pregnancy rates when compared with those obtained with fresh gametes (Rienzi et al., 2018).
1.2.5. Providing assisted reproduction in the context of Swedish healthcare
The goal of the Swedish health care is good health and care on equal terms for the entire population (Hälso- och sjukvårdslag [HSL], SFS 2017:30). Care shall be provided with respect for the equal value of all people and for the dignity of the individual and meet the requirements of good care. The person who are most in need of health care shall be given priority to health care. The care should also be of good quality and easily accessible, which means that care should be based on respect for the patient´s self-determination and integrity (HSL, SFS 2017:30; Patientlag, SFS 2014:821). The Swedish health care, should also comply with the Discrimination Act which is aimed at combating discrimination and in other ways promoting equal rights and opportunities regardless of gender, transgender identity or expression, ethnicity, religion or other belief, disability, sexual orientation or age
(Diskrimineringslagen, SFS 2008:567). Decisions on involuntary childlessness and assisted reproduction issues must take into account the above content (Justitiedepartementet, 2016).
All priorities in health care shall be based on three principles (Justitiedepartementet, 2016). These principles are; the principle of human dignity, the principle of need and solidarity and the principle of cost-effectiveness. The principle of human dignity is the most important in Swedish health care and means that all people have equal value and the same right regardless of personal characteristics and functions of society. The principle of need and solidarity
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means that resources should be allocated as needed and the principle of cost-effectiveness means that a reasonable relationship between cost and effect should be sought when making a choice between different measures. The relationship between cost and effect is usually
measured in improved health and improved quality of life. The cost-effectiveness principle shall be subordinate to the other two principles (Justitiedepartementet, 2016). All principles, but specially the principle of human dignity is of central importance in the subject of
involuntary childlessness and infertility. According to this principle, all human beings have the same value and the same right to have their rights satisfied. However, this principle does not mean that it is a human right to, at any cost, give birth to a child of one´s own or to become a parent of a child in some other way (Justitedepartementet, 2016; SMER 2013). The principle of human dignity could be invoked with regard to access to assisted reproduction for, for example, single and same-sex couples (SMER, 2013).
There are four priority groups when deciding and prioritising health care. The first priority group includes, among other things, care for life-threatening acute diseases and care for several chronic diseases. The second priority group includes prevention and
habilitation/rehabilitation. The third priority group includes care for less severe acute and chronic diseases and the fourth group includes care for reasons other than illness or injury. In the majority of involuntary childless persons, there is a biological disorder, such as a residual condition after previous illness or an ongoing chronic disease. Thus, it is considered to be a health-related need for treatment. Therefore, treatments for involuntary childlessness should be included in the third priority group (Justitiedepartementet, 2016).
The Swedish Association of Local Authorities and Regions (2016) has developed a recommendation regarding assisted reproduction that applies to all regions in Sweden and intend to achieve knowledge-based and equal care. The recommendations are developed to create unified care in all regions for those who wish assisted reproduction within the public health care. The recommendations contain uniformity in the whole country regarding
concepts, criteria for implementation, age limits and the number of treatments to be included in the subsidized treatment attempts. Three attempts are subsidized and if pregnancy has not been achieved after these attempts, the individual or the couple have to pay themselves.
6 1.3. Attitudes towards embryo donation
When couples undergo ART, they can cryopreserve their surplus embryos for future use. Couples that still have embryos cryopreserved as the maximum storage time approaches, are able to decide what to do with the remaining embryos (Socialdepartementet, 2018). In
Sweden, couples may choose to have them discarded, donated to research or donated to other couples or another woman for reproductive purposes (Socialdepartementet, 2018). These options are available in Sweden since 2019, when the Swedish ART legislation was amended. The requirement for a genetic link between at least one parent and the child was removed and treatments with only donated gametes as well as treatment with donated embryos were permitted (Socialdepartementet, 2018). The National Board of Health and Welfare in Sweden has not yet developed guidelines for embryo donation for reproductive purposes (Riksdagen, 2019). So far, they have only made changes to the agency’s regulations (Socialstyrelsens föreskrifter om donation och tillvaratagande av vävnader och celler, 2009). Thus, there are uncertainties of how the new law should be interpreted in clinical practice (Berg Hulthén, 2017; Riksdagen, 2019).
In a global context, some countries motivate prohibition of embryo donation for reproductive purposes with the emotional, ethical, legal and psychosocial consequences (Gianaroli,
Ferraretti, Magli & Sgargi, 2016). An example of an ethical issue that is discussed, could be the status of the human embryo. The status of the human embryo has been discussed in further occasions and according to SMER (2013), there are different views in society about the moral status of a human embryo and three different views can be distinguished. The first view is that human life begins at conception and the embryo has full human dignity. The second view is about the existence of human life, which is a process in which the embryo is a life with a certain protective value. Over the course of development, the protection value increases gradually and at the time when the foetus may be viable outside the human body, the protective value of the foetus passes into human dignity. The third and last view is that the embryo has development potential but in itself no protective value. The different views differs between individuals but may also differ in society, which may affect the ART legislation.
ART legislation may also depend on other different factors, such as social structure, political choices, ethical issues and religious beliefs. Which makes it hard to create a standard
regulation for different countries (Gianaroli et al., 2016). Even within the European countries there are differences in national policies regarding gamete donation. National regulations
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differ with reference to donors’ anonymity. Some countries guarantee donors’ anonymity and others allow recipient couples and/or the child to receive information about the donor.
Anonymous donation and non-anonymous donation exist to varying degrees. In a few countries, for example New Zealand, donors and recipients meet each other before making decisions about embryo donation (Goedeke & Payne, 2009). In some other countries, for example Sweden and United Kingdom, the donors and recipients do not get information about each other (Gianaroli et al., 2016). Individuals who are born following gamete donation are often allowed to get access to information about the donor once they reach 18 years (Gianaroli et al., 2016). In Sweden, the donor offspring allows information about the donor when
sufficient maturity is achieved (Lag om genetisk integritet m.m., SFS 2006:351). In New Zealand, embryo donation for reproductive purposes has been legal since 2005 and the procedure is strictly regulated by specific guidelines. These include a mandatory consultation for both donors and recipients and openness regarding the genetic link (Goedeke and Payne, 2009). This makes it apparently hard to create a standard regulation for different countries but also nationally, especially in cases like gamete and embryo donation (Gianaroli et al., 2016).
1.3.1. Attitudes towards embryo donation for research purposes
The proportion of IVF patients who donate embryos for research purposes varies between countries; from seven percent in France to 73 percent in Switzerland (Samorinha, Pereira, Machado, Figueiredo & Silva, 2014). People donating embryos for research purposes reports positive feelings about research and high levels of trust in medical systems. They describe their decision as better than discarding the embryos, an opportunity to help others and to improve IVF treatments. Those who do not donate embryos for research express perceptions of risks and lack of information concerning research projects. The conceptualization of embryos in terms of personhood or according to the moral, social, and instrumental status of the embryo were also a reason not to donate. Another review had similar results and found that there are multiple factors influencing couples’ decisions whether to donate their embryos for research or not (Hug, 2008). Important factors that contribute to the willingness to donate could be; knowing the research purpose, being well informed, having conceived as a result of IVF, being altruistic, being at the end of IVF treatment and having genetically linked children. Not knowing the research purpose, considering their embryos to be children and being at the beginning of IVF treatment were factors that affected the participants not to donate (Hug, 2008).
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1.3.2. Attitudes towards embryo donation for reproductive purposes
The attitudes towards embryo donation for reproductive purposes among Swedish women and men of reproductive age have been studied (Wånggren, Prag & Skoog Svanberg, 2013a). About 73 percent agrees that embryo donation in general should be allowed in Sweden. Three out of four are in favour of allowing embryo donation to couples for reproductive purposes and 49 percent are positive to embryo donation to single women (Wånggren et al., 2013a). A majority of participants believes that demands on the recipients age should exist and that the appropriate age was between 25 years and about 43 years (Wånggren et al., 2013a).
Participants also think that special requirements should be imposed on couples or individuals with alcohol abuse, drug abuse and criminal background. About 39 percent think the embryo donor should remain anonymous to the child, about 46 percent think the embryo donor should remain anonymous to the recipient and about 48 percent think the recipient should remain anonymous to the embryo donor (Wånggren et al., 2013a).
The attitudes towards embryo donation among Swedish healthcare professionals have also been studied. About 77 percent are positive towards embryo donation for reproductive purposes (Wånggren, Baban & Skoog Svanberg, 2014) and in another study with the same target group, about 69 percent are positive or neutral (Armuand, Sydsjö, Skoog Svanberg & Lampic, 2019). Most respondents state that there should be special requirements regarding special conditions (Wånggren et al., 2014). Special requirements mentioned in the study are regarding age, sexual orientation, education level, tobacco use, alcohol use, drug use and criminal background. Most participants think that donors should remain anonymous to the recipients and the other way around (Wånggren et al., 2014). However, the majority did not think donors should remain anonymous to the donor conceived offspring (Wånggren et al., 2014) and most agreed that it is important for parents to be honest about the mode of conception (Armuand et al., 2019).
1.4. Problem explanation
Involuntary childlessness and infertility affect a large group of people and WHO calls it a global public health issue. In January 2019, the Swedish legislation concerning assisted fertilization was amended. The requirement for a genetic link between at least one parent and the child was removed. The new legislation implies a new possibility for couples to donate embryos to other couples for reproductive purposes. It is important to compile knowledge about couples' attitudes towards embryo donation for reproductive purposes in order to
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provide a deeper understanding of the issue. This knowledge could be utilized for future decisions and guidelines that may be implemented. To my knowledge, no literature review with a qualitative approach has been done about views on embryo donation for reproductive purposes among couples with experience of cryopreserved embryos.
1.5. Aim
The aim of the study was to examine views on embryo donation for reproductive purposes among couples with experience of cryopreserved embryos.
2. METHODS
2.1. DesignIn order to answer the aim, a literature review was conducted. A literature review is an
appropriate design as it provides an examination of recent and current literature and can cover a wide range of topics at various levels of completeness and comprehensiveness (Grant & Booth, 2009). It is used when the aim is to get an overview, to identify the state of knowledge and could include both qualitative and quantitative research (Grant & Booth, 2009). The method of a literature review is not as strict as the method of a systematic review (Forsberg & Wengström, 2016), but this literature review was conducted based on a systematic structure. Therefore, it has a formulated aim and uses methodical and clear methods to identify, collect, and critically assess relevant studies, and to analyse data from them (Grant & Booth, 2009).
2.2. Search procedure
Search terms were determined based on the aim of the study and electronic databases used were PubMed and Web of Science. A smaller search on Google Scholar was also included to search for relevant literature, as well as a manual search. An initial literature search was performed to get an overview of relevant information and search terms. An initial literature search creates the basis for the search work. This is done in order to gain an understanding of which databases that are relevant and to obtain enough background information to be able to proceed to the actual literature search (Östlundh, 2017). An overview was carried out of the studies that emerged during the search and common search terms were processed. The actual literature search was carried out after this.
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Both MeSH-terms and free text words were used. Search terms used were: “embryo
donation”, “embryo disposition”, “embryo disposal”, “couple”, “attitudes” and “views”. To combine the search terms the Boolean search operators AND and OR were used. The search terms used were consistent across the databases, although the syntax was altered to account for differences in the databases. Due to differences in which limitations you were able to choose, they were different between the two databases. The limitations used in PubMed were “English”, “Humans” and the years 2000-2020, in Web of Science “English”, “Article” and the years 2000-2020, and in Google Scholar years 2000-2020. All literature searches and search terms are available in Appendix 1 and were carried out on three separate occasions between 200330 and 200415. Additionally, the search was followed by a manual reference tracking, examining the references of the selected publications and previous literature reviews in order to identify more relevant studies.
2.3. Selection process
The selection process and screening were undertaken in two stages: the title and abstract stage and full-text stage. The whole selection process was guided by the aim and the inclusion and exclusion criteria.
2.3.1. Inclusion and exclusion criteria
Inclusion and exclusion criteria were pre-determined in order to limit which studies to include in the literature review. Included studies were all studies that studied couples’ attitudes and views towards embryo donation for reproductive purposes, although only a small part of the studies studied this topic. Included studies were also those that studied couples’ and
individuals’ decision-making process, factors influencing the donation of embryos, and why/why not couples do donate their embryos to others for reproductive purposes. As the emphasis was on couples’ views towards embryo donation for reproductive purposes, only studies with couples with experience of cryopreserved embryos as the study took place were included. In some studies, one individual in the couple did not want to participate, which is why only one individual was interviewed. These studies were nevertheless included as they otherwise met the inclusion criteria. In the results of this study, they will henceforth be
included in the concept of couples. The studies also had to be original empirical studies with a qualitative methodology. Mixed or quantitative methodology where free text or comments could be written down by the participant and were analysed qualitatively were also included. Furthermore peer-reviewed and studies published between 2000-2020.
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Studies with a philosophical or an ethical approach and couples’ attitudes towards donating embryos for research or medical treatment were excluded. Studies without an ethical
consideration or an ethical approval were also excluded. Also, systematic reviews and full text studies not available electronically for free through Uppsala University Library were
excluded. There were items that were not available but could be ordered at a cost, but these were excluded.
2.3.2. Screening procedure – Title and abstract stage
Initially, 17.710 studies were found in the databases combined. 1.010 of these were screened on title/abstract level, after which 201 studies remained. The studies were screened on the basis of the aim and the inclusion and exclusion criteria. After duplicates were removed, 84 studies remained for the full-text stage.
2.3.3. Selection process - Full-text stage
Full-text screening was carried out with the remaining 84 studies. After reading the full text studies 62 were excluded because they did not fulfil the inclusion and exclusion criteria. A manual reference tracking was done by reviewing the reference lists of the remaining studies. One study was found after the manual reference tracking. 22 articles remained for quality assessment.
2.4. Processing and analysis
2.4.1. Quality assessment
22 studies were assessed on quality using the quality assessment tool for qualitative studies by Forsberg and Wengström (2016). For studies with a quantitative approach with free text comments, the qualitative assessment tool was used because only the qualitative parts in the studies were used. The studies were graded according to the questions in the assessment tool and each score point was scored. For each question, “Yes” scored one point and “No” scored zero points. If there was lack or no information about a score point, it was scored zero points. Nine studies were considered high quality and twelve considered of moderate quality (see Appendix 2). Two studies from Google Scholar were excluded due to lack of ethical
consideration or ethical approval and one of these also had low quality. There was only one evaluator who assessed and came up with the final scores for the included studies. An overview of the included studies is summarized in Appendix 2.
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2.4.2. Results analysis
After the quality assessment the remaining 20 studies were analysed to synthesize a result according to a method by both Friberg (2017) and Forsberg & Wengström (2016). The analysis is a process, and several analytical steps need to be reviewed. The studies were broken down into smaller parts and then assembled into a new whole (Forsberg &
Wengström, 2016). The first step of the analysis process was the familiarization with the data. Studies were read and re-read several times to understand content and context. Subsequently, the studies were read again to systematically identify overall similarities, differences, and patterns in the result. The studies were read to find these parts and a color selection was performed. The content was sorted under appropriate headings as well as color markings. These headings and areas then were processed to become different themes. These themes are presented in the results in this literature review.
2.5. Ethical considerations
Ethical considerations were taken into account and the benefits of research should outweigh the risks. When research involves human beings, they shall be informed about the research and their participation. Consideration for the person's self-determination and integrity shall be taken and, as far as possible, carried out and designed in consultation with the person involved (CODEX, 2020). All research should be voluntary, and participants should leave an informed consent. Those who choose to participate in the research shall have the right to discontinue their participation at any time. All research should also be designed to avoid harm and suffering to those involved (CODEX, 2020).
Ethical considerations in systematic reviews should be made regarding the selection and presentation of the results (Forsberg & Wengström, 2016). It is important to select studies with an ethical approval or ethical considerations, to present all studies that are included in the literature review and to present all results that support or do not support the hypothesis. It is unethical to present only those studies that support the researcher’s or the authors opinion (Forsberg & Wengström, 2016). Ethical considerations have therefore been taken into account by the fact that all studies included have been ethically approved and that all studies that fulfilled the inclusion criteria were included in the literature review, regardless of the results.
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3. RESULTS
Five themes were identified:“The status of the human embryo”, “The genetic link”,
“Selection of recipients”, “Contact and relationship between donors, recipients and offspring” and “The decision-making whether to donate surplus embryos or not”. One
subtheme to “The genetic link” also emerged, which is: “Genetic screening of donors”. An overview of the studies included and analysed in the present literature review is presented in Appendix 2.
3.1. The status of the human embryo
Couples held a wide range of views on the moral status of the embryo and described a human embryo as a thing, cells, a living entity, a potential child, a child and a baby (Bartholomaeus & Riggs, 2019; de Lacey, 2005; de Lacey, 2007; Frith, Blyth, Paul & Berger, 2011; Fuscaldo, Russel & Gillam, 2007; Goedeke & Daniels, 2017; Provoost et al., 2009; Zimon et al., 2019). Some couples had multiple understandings of embryos and referred to them differently during the interviews depending on the context (Bartholomaeus & Riggs, 2019), while some couples were unsure of how they saw the status of the human embryo, and thought that the embryo had no moral significance (Frith et al., 2011).
When couples described their embryos as things, they more frequently mentioned the need of emotional distance and fear of getting too emotionally attached to their embryos (de Lacey, 2007; Fuscaldo et al., 2007; Provoost et al., 2009). In a study by Bartholomaeus and Riggs (2019), the concept cells were always described in the context of cells which have potential, rather than simply as cells stored in a clinic. Even when framing embryos as cells, they may still be seen as having the potential of life. Another view of the matter was that an embryo deserved at least some sort of respect and should be afforded the same dignity and rights as a human being (Frith et al., 2011). Some couples also expressed that embryos deserve special and careful consideration similar to an existing child or adult, while others expressed that embryos deserve special consideration but not a status similar to an existing child (Frith et al., 2011; Lyerly et al., 2006). Couples who described their embryos mostly as children more often expressed positive feelings towards them (de Lacey, 2007; Provoost et al., 2009).
Couples mentioned embryos as virtual persons or children (de Lacey, 2005; McMahon & Saunders, 2009; Nachtigall, Becker, Friese, Butler & MacDougall, 2005) and embryo
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donation as relinquishment, metaphorically like giving a child away (de Lacey, 2005; McMahon & Saunders, 2009; Paul, Berger, Blyth & Frith, 2010). Some couples referred to “giving it away” or “an early stage of adoption”, indicating a metaphorical reference to adoption and relinquishment (de Lacey, 2007; Goedeke, Daniels, Thorpe & Du Preez, 2015; Goedeke & Daniels, 2017; Kufner, Tonne & Barth, 2009; McMahon & Saunders, 2009; Melamed et al., 2009). Also, the metaphorical reference to pregnancy termination as to “get rid of it” has been mentioned (de Lacey, 2007).
Embryos were also described as objects with a high instrumental value (Provoost et al., 2009). The instrumental value was brought up by couples in two different aspects. The first aspect was related to the creation of the embryo, that the couples themselves and members of the medical team had invested and had put energy into the creation of the embryo. The second aspect was the couples’ awareness of potential benefits with embryo donation and couples even compared embryos with organs with an important level of usability (de Lacey, 2007; Provoost et al., 2009; Söderström-Anttila, Foudila, Ripatti & Siegberg, 2001).
The understandings of embryos could change over time. This was particularly the case for couples with embryos in storage, and the views changed through the IVF process and as the couples became parents (Bartholomaeus & Riggs, 2019; de Lacey, 2005; Fuscaldo et al., 2007; Millbank, Stuhmcke & Karpin, 2017). Some couples explained that the way they viewed their surplus embryos had changed after having children and that parenthood might change the status of the embryo and the way parents think about them (de Lacey, 2005). Those who believed that an embryo should be given the same dignity and rights as a human being, and those who had children or currently were expecting after IVF treatment, were less likely to donate surplus embryos to other couples (de Lacey, 2005; Fuscaldo et al., 2007). However, another study found that when an embryo was seen as a person who deserved to live, and it was of high value to others in creating a family, couples were more likely to donate to others (Provoost et al., 2009).
3.2. The genetic link
Couples described the genetic link between the donors and the donor conceived offspring as a permanent link, which could make embryo donation for reproductive purposes a difficult choice (Goedeke et al., 2015; McMahon & Saunders, 2009; Provoost et al., 2009). The genetic link between the donating couple and the donor conceived offspring could be
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considered important by couples in two ways (Goedeke et al., 2015). In one way, the genetic link between the donors and donor conceived offspring was regarded as bestowing immutable social connections and ties that all parties needed to be aware of (Goedeke et al., 2015). In another way, the genetic composition was regarded as bestowing medical and/or psychosocial characteristics and conditions, and that genetics had some impact of the child’s development (Goedeke et al., 2015).
Several couples spoke about the embryos as a part of the women and the man, as “us” or “their child” due to the complete genetic relatedness (deLacey, 2005; deLacey, 2007; McMahon & Saunders, 2009; Fuscaldo et al., 2007). Those couples who took this into account were more insecure about donating their embryos to other couples (deLacey, 2005; deLacey, 2007). When embryos were conceived at the same time, some couples believed that they would all have the same genetic mixture and compared this to a batch of muffins having the exact same ingredients. Therefore, couples used words as “twin siblings” or “clones” to illustrate this (deLacey, 2005). They also expressed concerns regarding the genetic link between the donors child and a donor conceived offspring and if these meet each other
without knowing they are related (de Lacey, 2005; McMahon & Saunders, 2009; Nachtigall et al., 2005; Söderstöm-Anttila et al., 2001).
Another factor described when discussing the genetic link was the anonymity in embryo donation. Couples attitudes towards anonymity in embryo donation was divided (Fuscaldo et al., 2007; Goedeke et al., 2015; Provoost et al., 2009; Söderström-Anttila et al., 2001). Some couples expressed that donor anonymity would make them decide not to donate their embryos (Fuscaldo et al., 2007; Goedeke et al., 2015), while others expressed that a guarantee of ongoing anonymity would make it easier for them to donate surplus embryos to other couples (Fuscaldo et al., 2007; Söderström-Anttila et al., 2001). Though, couples were sceptical that guarantees of total anonymity were ever possible (Fuscaldo et al., 2007).
The couples had divided opinions regarding the donor conceived offspring to have access and information about their genetic identity, but the majority of the couples emphasized this (Amor et al., 2018; Fuscaldo et al., 2007; Frith et al., 2011; Goedeke et al., 2015; Goedeke & Daniels, 2018). By contrast there were couples who thought the opposite, that children have no right to information about their genetic identity (Fuscaldo et al., 2007). They explained this claim as the children being confused about what it really is that gives people their identity.
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However, it has also been mentioned that identifiability in both directions should be preferred if a medical problem or either one would need the other (Provoost et al., 2009).
3.2.1. Genetic screening of donors
The attitudes of the collection of genetic information in the donor process and the possibility of conducting genetic screening of donors has been studied in an Australian study (Amor et al., 2018). Couples understood the importance of genetic information for recipients and thought the existing level of screening of donors in Australia were agreeable. However, there were also difficulties with the information sharing and screening. Couples mentioned the difficulty of having to find out their family history and the many factors identified within the genetic screening process. Also, they did not always see the relevance in the genetic
screening, but at the same time, they admitted that the screening was important as it could prevent the transmission of serious genetic conditions.
Some couples mentioned that they were concerned about the results of the tests, even though there were no genetic condition that they knew about in the family (Amor et al., 2018). They also mentioned the level of scrutiny in the genetic screening, and comparisons were drawn with couples conceiving naturally and how they did not have to undergo a screening before the pregnancy. Opinions about the ethics of genetic screening of donors and whether this type of screening could create a child superior to a naturally conceived child and genetic selectivity were expressed by couples. Couples felt that a high level of screening could promote the idea of a perfect child and mentioned the children as “designer babies”. They questioned whether society was “crossing a line” when trying to create perfect human beings. There were couples that felt that this type of screening was morally wrong and could create inequalities, and a feeling that technology has advanced quickly and more thoughts should be given as whether these screening procedures could do more harm than good. Couples were also concerned about that fewer individuals would choose to donate gametes if levels of genetic screening would be increased.
3.3. Selection of recipients
Couples expressed feelings of responsibility for a potential offspring and a wish to protect the welfare and interests of the child when considering embryo donation for reproductive
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Goedeke & Daniels, 2017; Goedeke & Daniels, 2018; Lyerly et al., 2006; McMahon & Saunders, 2009; Paul et al., 2010; Provoost et al., 2009; Zimon et al., 2019). Several couples also expressed a worry that their child would be mistreated or abused, that the child would be in an improper family due to their personality or that they may become orphans (de Lacey, 2005). On the other hand, other couples expressed that they felt quite sure that couples undergoing IVF and were on the waiting lists would do ‘as good a job’ of parenting as they would (Fuscaldo et al., 2007).
Couples expressed fear of not being able to stop wondering about the offspring (de Lacey, 2005; Fuscaldo et al., 2007; McMahon & Saunders, 2009; Paul et al., 2010; Provoost et al., 2009; Zimon et al., 2019). They expressed concerns about how the child might be raised, by whom (Fuscaldo et al., 2007) and how the offspring will be treated and raised by potential recipients (Paul et al., 2010). The fact that couples could not control the welfare of the child was a factor not to donate surplus embryos (Provoost et al., 2009). Due to these concerns, a desire to be able to be involved in the process of selecting suitable recipients was expressed by some couples (Frith et al., 2011; Fuscaldo et al., 2007; Goedeke et al., 2015; McMahon & Saunders, 2009). Some wanted to get to know the recipients before making a decision to donate their embryos (Bartholomaeus & Riggs, 2019; Frith et al., 2011; Goedeke & Daniels, 2018; Paul et al., 2010) and some couples stated that they might be more likely to donate if they knew something about the recipients and their family life (Fuscaldo et al., 2007; McMahon & Saunders, 2009).
Couples expressed different opinions on different conditions and restrictions for embryo donation. Suggested information from the donors about recipients, that would be helpful in the decision-making would be, knowledge of family background, occupation, religion, sexual orientation, health status and previous criminal record (Fuscaldo et al., 2007; McMahon & Saunders, 2009; Paul et al., 2010). Some considered donating to healthy couples while some did not want to donate to unemployed (Provoost et al., 2009). Some donors also valued financial security, family support or family network, relationship stability, recipients with previous experience with children, particularly those different from the mainstream, and some couples valued age (Goedeke & Daniels, 2018).
A factor claimed to be affecting donors’ choice of recipients was that recipients should be similar to themselves or people with whom they felt they could build good relationships.
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When speaking of similar to themselves, both outlook and characteristics were mentioned, but also same philosophies and feelings of life (Goedeke & Daniels, 2018; McMahon &
Saunders, 2009; Paul et al., 2010). There were even couples who preferred a direct donation to family or friends due to the factors mentioned above (Fuscaldo et al., 2007).
Some couples felt uncomfortable about the possibility of choosing the recipients and described this as unfairly discriminatory or that they had concerns about potential
discrimination (Fuscaldo et al., 2007; McMahon & Saunders, 2009). There were also couples who thought there should not be specific conditions and stated that they considered all possible recipients to have an equal right to their embryos (McMahon & Saunders, 2009; Provoost et al., 2009). Some of those who had concerns about potential discrimination if donors could select recipients, thought that some kind of limits should be made (McMahon & Saunders, 2009).
A few couples saw themselves as responsible for choosing the right recipients (Goedeke & Daniels, 2018; McMahon & Saunders, 2009) while others felt troubled by how to guarantee a good outcome (Fuscaldo et al., 2007). Another view towards the donation of surplus embryos was that some couples felt that if the choice to donate was made, the couple needed to
relinquish control and trust the system to donate to appropriate recipients (McMahon & Saunders, 2009).
3.4. Contact and relationship between donors, recipients and offspring
Different levels of contact and involvement between the donors and the recipients were desirable by the couples (Bartholomseus & Riggs, 2019; Frith et al., 2011; Goedeke & Daniels, 2017; Goedeke & Daniels, 2018; Millbank et al., 2017). The amount of contact ranged from, those who wanted close relationships with the recipient families and would prefer face-to-face contact, to those who did not want any contact at all (Bartholomseus & Riggs, 2019; Frith et al., 2011; Millbank et al., 2017). It was recognized that it was an evolving process, and the exact levels of future contact and involvement could not be determined in advance (Frith et al., 2011). However, possibility of negotiating an open arrangement for the donation of the embryos were important for some couples (Frith et al., 2011; Paul et al., 2010). Some couples also discussed wanting a relationship with the recipients but letting the recipients choose how much they wanted them in their lives (Bartholomaeus & Riggs, 2019; Goedeke & Daniels, 2018; Paul et al., 2010).
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Ambivalence related to the contact between the donors and the donor conceived offspring has also been mentioned by couples (Paul et al., 2010; Söderström-Anttila et al., 2001). Some couples had thoughts about if the donor conceived offspring would consider contact with them and a future relationship, while other couples were not sure about the desired relationship at all (Paul et al., 2010). Some couples thought it would be entirely the donor conceived offspring’s choice to pursue contact or a relationship, both with donors and with possible siblings (Paul et al., 2010; Söderström-Anttila et al., 2001). The couples felt it was important that the donor conceived offspring could have a relationship with the children of the donating couple if desired (Frith et al., 2011; Goedeke et al., 2015).
Couples reflected on how they viewed the relationship between donor and recipient families, viewing these as close kinship relations to no relationships at all (Bartholomaeus & Riggs, 2019). Concepts often used when kinship relations were described were extended families and friendships (Bartholomaeus & Riggs, 2019; Goedeke et al., 2015; Paul et al., 2010). One couple described the relationship as having some kind of role though not as a parent, while another suggested taking the role of an auntie (Fuscaldo et al., 2007).
Couples often emphasized that the relationships were for the children rather than for the parents (Bartholomaeus & Riggs, 2019; Frith et al., 2011; Millbank et al., 2017), but could also be because of the extended family view (Goedeke & Daniels, 2017; Goedeke & Daniels, 2018). On the other hand, there were couples that did not view embryo donation as
automatically translating to a kinship relation or a relationship at all (Bartholomaeus & Riggs, 2019; Millbank et al., 2017). A closer relationship with the recipients might make it difficult and confusing both for the donor conceived offspring and the adults involved. This might even result in different conflicts expressed by some couples (Fuscaldo et al., 2007). Couples also discussed the preference for recipient families not to live too close. There was a fear of seeing each other unexpectedly and therefore, they would prefer to donate to people living elsewhere (Bartholomaeus & Riggs, 2019).
3.5. The decision-making whether to donate surplus embryos or not
There are varying degrees of difficulty in making a decision about surplus embryos to other couples for reproductive purposes and couples expressed different reasons of why donating embryos could be a difficult choice (de Lacey, 2007; Fuscaldo et al., 2007). For some couples, these difficulties were supported by conflicts deriving from religious, social,
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emotional, and moral/ethical factors (Fuscaldo et al., 2007). Several women and men
expressed physical, emotional, and financial investment in the creation of their embryos, and their sense of wasting something valuable (de Lacey, 2005; McMahon & Saunders, 2009). Some couples described donation as a good, altruistic and empathic thing to do (Lyerly et al., 2006; McMahon & Saunders, 2009; Zimon et al., 2019), but that they would find the option difficult because of the moral distress and feelings of conflict (Fuscaldo et al., 2007; Paul et al., 2010). Some couples did not want to destroy their embryos but found the thought of donating to others as unpleasant and caused discomfort (de Lacey, 2005; de Lacey, 2007).
Embryo donation to others for reproductive purposes was not always perceived as an ideal disposition for surplus embryos. Some couples thought it was the ‘least bad’ option among the alternatives existing (Frith et al., 2011; Paul et al., 2010). For some couple’s destruction of an embryo was prohibited due to the religion (Lyerly et al., 2006; Paul et al., 2010) and others expressed the destruction as morally wrong (de Lacey, 2005; Paul et al., 2010). The word selfish were used when describing the decision not to donate and several expressed a sense of regret at being unable to help another couple (de Lacey, 2005; McMahon & Saunders, 2009). When some couples decided they would not use the embryos themselves the decision to donate to others was much harder than they could imagine (de Lacey, 2005).
Others felt confident about the decision-making, believing that only one option was right for them, or felt no conflict over choosing between different options (de Lacey, 2007; Fuscaldo et al., 2007; Millbank et al., 2017; Paul et al., 2010). Underlying the decision to donate to others was both a desire not to waste embryos and concerns about preserving the life of an embryo (deLacey, 2005; de Lacey, 2007; Frith et al., 2011; Fuscaldo et al., 2007; Skoog Svanberg, Boivin & Bergh, 2001; Provoost et al., 2009). Waste could have several meanings, such as waste of personal effort, sentimental value, intrinsic value, and the potential for benefiting others (de Lacey, 2007). Instead, the intention to donate surplus embryos to another infertile couple was explained as a wish to help others (de Lacey, 2005; Frith et al., 2011; Fuscaldo et al., 2007; Kufner, 2009; Paul et al., 2010; Provoost et al., 2009; Zimon et al., 2019). Also, couples who did not want to donate had taken this aspect into consideration (McMahon & Saunders, 2009; Provoost et al., 2009; Zimon et al., 2019).
However, couples also expressed contesting beliefs concerning what was perceived to be the right thing to do (Frith et al., 2011; Fuscaldo et al., 2007; Goedeke et al., 2015; Provoost et
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al., 2009). The couple’s own experience of trying to become pregnant, failed attempts to achieve pregnancy and the repetition of emotional experience were essential in the initial decision-making progress (de Lacey, 2005; Goedeke & Daniels, 2017; Paul et al., 2010; Zimon et al., 2019). There was also a feeling of wanting to ‘give back’ (Goedeke & Daniels, 2017). While some couples had a desire not to waste their embryos, and therefore rather donate them, other couples did perceive waste in reproduction to be normal. These couples considered loss of embryos as morally acceptable because discarding them is emulation nature (deLacey, 2007).
Factors suggested to improve the decision-making process were more information about the currently available options and better timing of the information (Fuscaldo et al., 2007; Lyerly et al., 2006). Couples told they were overwhelmed with information in the early stages of IVF and were not in a state of mind to consider what they might do in the future with possible surplus embryos (Fuscaldo et al., 2007; Lyerly et al., 2006).
4. DISCUSSION
The present literature review aimed to examine views on embryo donation for reproductive purposes among couples with experience of cryopreserved embryos. A total of 20 studies were included in the results. The results show that there are different views towards the status of the human embryo, views towards the genetic link, information sharing and screening, views towards the selection of recipients, views towards the contact and relationships between donors, recipients and offspring, and views towards the decision-making whether to donate surplus embryos or not.
4.1. Result discussion
4.1.1. The status of the human embryo
What is considered natural and unnatural is closely associated with norms and values that exist in a society (SMER, 2013). According to SMER (2013), there are different views in society about the moral status of a human embryo and three different views can be
distinguished. However, it is not obvious when in the process an embryo turns into being an individual of full human dignity. The different views of the moral status of the human embryo could also be seen in the results of this literature review when couples described the status of the human embryo.
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The human embryo was described as a thing, cells, a living entity, a potential child, a child and a baby (Bartholomaeus & Riggs, 2019; de Lacey, 2005; de Lacey, 2007; Frith et al., 2011; Fuscaldo et al., 2007; Goedeke & Daniels, 2017; Provoost et al., 2009; Zimon et al., 2019). Furthermore, depending on how couples perceive the moral status of the human embryo, may have an impact on the views towards the donation of surplus embryos for reproductive purposes (Fuscaldo et al., 2007; Provoost et al, 2009; Frith et al., 2011). Similar results were found when investigating the attitudes towards embryo donation for research purposes (Samorinha et al., 2014). The conceptualization of embryos in terms of personhood (Hug, 2008; Samorinha et al., 2014) or according to the moral, social, and instrumental status of the embryo were shown to be reasons not to donate for research purposes (Samorinha et al., 2014). Blyth, Frith, Paul & Berger (2011) also found the conceptualisation of the embryos as a factor in the decision-making process on surplus embryos. These multiple understandings of the status of the human embryo may emphasize the complex nature of embryos and how they are understood.
It has been reported that couples who initially indicated an intention to donate surplus embryos to other couples for reproductive purposes changed their mind when the decision must be made or if the couple successfully conceived a child (Blyth et al., 2011). Also, in research about embryo donation for research purposes both having conceived as a result of IVF and being in the end of IVF treatment could affect donation (Hug, 2008). These results are similar to those in the present study as the understanding of embryos could change over time, which was particularly the case for couples with embryos in storage, changed views through the IVF process and as the couples became parents (Bartholomaeus & Riggs, 2019; de Lacey, 2005; Fuscaldo et al., 2007; Millbank et al., 2017). Some couples had multiple understandings of embryos and referred to them differently during the interviews depending on the context (Bartholomaeus & Riggs, 2019). This indicates that couples could have different views when thinking about and making decisions about surplus embryos.
4.1.2. The genetic link
Embryo donation, unlike oocyte or sperm donation, involves the full genetic material of the donating couple, and not only the genetic material from one individual (SMER, 2013). This was taken into account by several couples when talking about embryo donation and the embryos as a part of the women and the man, due to the complete genetic relatedness
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described the genetic link between the donors and the donor conceived offspring as a permanent link, which could make embryo donation for reproductive purposes a difficult choice (Goedeke et al., 2015; McMahon & Saunders, 2009; Provoost et al., 2009).
An important question in embryo donation is whether the donor conceived offspring should be informed about the facts of their conception and the amount of information about donors that should be revealed (ASRM, 2018). Donors, recipients and offspring may have different views on these issues. Couples had divided opinions regarding the donor conceived offspring to have access and information about their genetic identity, but the majority of the couples emphasized the child to have information about their genetic identity (Amor et al., 2018; Fuscaldo et al., 2007; Frith et al., 2011; Goedeke et al., 2015; Goedeke & Daniels, 2018). In Sweden, it is the child's right to get information about their genetic identity and a basic prerequisite for ethical reasoning regarding the donation of gametes (Lag om genetisk integritet m.m., SFS 2006:351). Every individual has the right to be informed of his or her genetic identity regardless of the importance of the genetic and non-genetic relationship between parents and child. If the child is not informed, this could be seen as an indignity of the integrity of the child (SMER, 2013). This argument is based on the principle of the child's best interests, which is written in the Convention on the Rights of the Child (UN, 1989). There may also be other reasons for openness about the genetic identity, such as medical reasons where certain genetic diseases may be useful to have knowledge about, but also to prevent genetic half- or full siblings from marrying each other (SMER, 2013).
Another factor discussed was the anonymity in embryo donation and the attitudes towards anonymity in embryo donation was divided (Fuscaldo et al., 2007; Goedeke et al., 2015; Provoost et al., 2009; Söderström-Anttila et al., 2001). Likewise, the results in the present study, the attitudes towards anonymity in embryo donation among women and men of
reproductive age in a Swedish study was divided (Wånggren et al., 2013a). Just as the couples had divided opinions, countries have different regulations (Gianaroli et al., 2016), and could obviously have an impact on what couples decide to do with their surplus embryos. Both anonymous donation and non-anonymous donation exist to varying degrees. In a few countries donors and recipients meet each other before making decisions about embryo donation (Goedeke & Payne, 2009). While in some other countries, the donors and recipients do not get information about each other (Gianaroli et al., 2016). These differences may depend on different factors, such as social structure, political choices, ethical issues and
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religious beliefs (Gianaroli et al., 2016). Which could suggest the difficulties in making a standard regulation for different countries, and the importance for every country to build their own regulations and guidelines due to different factors and cultural contexts. Perhaps,
different options need to be available to satisfy the wishes of both donors and recipients when discussing anonymity towards each other, but the child should always be informed about their genetic identity.
4.1.3. Selection of recipients
Couples expressed feelings of responsibility for a potential offspring and a wish to protect the welfare and interests of the child when considering embryo donation for reproductive
purposes (de Lacey, 2005; Fuscaldo et al., 2007; Frith et al., 2011; Goedeke et al., 2015; Goedeke & Daniels, 2017; Goedeke & Daniels, 2018; Lyerly et al., 2006; McMahon & Saunders, 2009; Paul et al., 2010; Provoost et al., 2009; Zimon et al., 2019). Due to different concerns regarding the offspring, a desire to be able to be involved in the process of selecting suitable recipients was expressed (Fuscaldo et al., 2007; Frith et al., 2011; Goedeke et al., 2015; McMahon & Saunders, 2009). In Sweden, the donors may not be involved in this process. Instead, the responsible physician carries out an assessment taking into account the individual circumstances of the recipient to act as a parent (Justitiedepartementet, 2016). The treatment may only be carried out if the future child will grow up under good conditions and good circumstances. Account should be taken of age, health status, disabilities,
interrelationship of couples, living conditions and attitude towards telling the child about genetic origin. However, the assessment shall not constitute an excessive intrusion into reproductive freedom and integrity.
Some couples felt uncomfortable about the possibility of choosing the recipients and described this as unfairly discriminatory or that they had concerns about potential
discrimination (Fuscaldo et al., 2007; McMahon & Saunders, 2009). Some of those who had concerns about potential discrimination, if donors could select recipients, thought that some kind of limits should be made (McMahon & Saunders, 2009). Due to potential discrimination, it is an important part to take into account and probably it is required to have some kind of limits on how much the couples can decide and choose between recipients. Though, it is important to respect that it is ultimately the couples who decide what they want to do with their embryos in the end and healthcare professionals should be perceptive to their concerns and will. The present literature review addresses the aspect of discrimination in couples in
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case it is permitted to select recipients to their embryos, which could be against the law (Diskrimineringslagen, SFS 2008:567). This should also be taken into account when physicians make their assessment, and they should act on the basic principle of equal value and the equal rights of all people.
4.1.4. Contact and relationship between donors, recipients and offspring
Embryo donation could result in a complex social family network, which includes the donors, recipients, the donor conceived offspring and other family members. At the same time, all parties may find it difficult to cope with the knowledge of having genetic parents or siblings elsewhere and may have a willingness to get to know them (Huele, Kool, Bos, Fauser & Bredenoord, 2020). The present study shows that different levels of contact and involvement between the donors and the recipients are required (Bartholomseus & Riggs, 2019; Frith et al., 2011; Goedeke & Daniels, 2017; Goedeke & Daniels, 2018; Millbank et al., 2017) and
ambivalence related to the contact between the donors and the donor conceived offspring has been mentioned by couples (Paul et al., 2010; Söderström-Anttila et al., 2001). Couples also reflected on the view of the relationship, viewing these as close kinship relations to no relationships at all (Bartholomaeus & Riggs, 2019). These wide range views and complexity may be a problem, especially when donors, recipients and the donor conceived offspring want different levels of contact, or in countries where donors and recipients are anonymous to each other. On the other hand, in society today, changes in norms and values are happening all the time and the perception of parenting and the family can vary in different contexts, over time but also between different individuals (SMER, 2013). Today there are different forms of family constellations and the family concept is used more widely. It is considered more accepted that family constellations other than the traditional nuclear family may be of the child's best interests (SMER, 2013). The concept of family is also used more widely and can include both foster children, friends, relatives and pets. These different views on family constellations are shown in the present literature review and does not seem to be an obstacle towards the donation of embryos for reproductive purposes in all couples.
4.1.5. The decision-making whether to donate surplus embryos or not
There might be varying degrees of difficulty in making a decision about surplus embryos to other couples for reproductive purposes. Some couples described donation as a good,
