Kin or Research Material? Exploring IVF Couples’ Perceptions about the Human Embryo and Implications for Disposition Decisions in Norway

During the process of in vitro fertilization (IVF), eggs are retrieved from a woman’s body and fertilised in a petri dish in the lab outside of her body, only to be transferred back for pregnancy. Although these technological advances have allowed millions of babies to be born since 1978, they have also raised debates about the moral status of the human embryo, particularly for embryo research and donation. At the heart of the debate have been the controversies and tensions between societal interests in medical advances and worries regarding treating human embryos with dignity (McMahon et al. 2003). The embryo in such a context has been subjected to philosophical, theological, ethical and political debate and scrutiny (Melhuus 2015). The ways in which patients or couples undergoing IVF, who are the ones going through treatment and potentially donating their embryos, relate to their surplus embryos have received increased attention in the global literature. Surplus refers to either fresh embryos sorted by the embryologist in the clinic as unsuitable for implantation into a woman’s’ womb because of poor quality or to cryopreserved (frozen) spare embryos that remain after the couple ends fertility treatment (Parry 2006). Disposal options for cryopreserved embryos involve discarding them, continuing to freeze them, or donating them to research or to another infertile couple. However, the legal frameworks for storage limits of cryopreserved embryos and donation options vary in different countries worldwide.

Millbank et al. (2016) show that it is exactly in such various local contexts and differences that our understanding of patient views and experiences about donation must be situated. Such views, experiences and disposition decisions, they argue, do not occur in a social or legal vacuum but are influenced by a number of external factors (Millbank, Stuhmcke, and Karpin 2016). Goedeke et al. (2017) highlight how choices and actions in relation to embryos are complex; they point to several studies (for instance Nachtigall et al. 2005; de Lacey 2007; Lyerly et al. 2010) showing that decisions—which take place in the context of cultural factors and changing public policy—are emotionally challenging, demand extensive moral reasoning, and are often delayed. Research has also shown how choices made about embryo donation and their future are shaped by notions of kinship, family and relations (Roberts 2011). Kato and Sleeboom-Faulkner (2011) show how cultural notions of motherhood (i.e., the mother’s view about her responsibility towards her children) play a crucial role in the disposal and ontological meaning of embryos. For some, understanding how patients conceptualise the human embryo—its moral status—is central in influencing their disposition choices (see Goedeke et al. 2017). Although the embryo is a global entity in terms of being of the same material across the world, its particular meaning is created in local context (Melhuus 2015). Research conducted on the topic in various countries shows the different meanings attached to embryos in a variety of contexts (Parry 2006).

Franklin (1995) has pointed to how the human embryo made outside of the human body exists in a liminality, a contested location between science and nature. According to Western kinship definitions, the embryo satisfy the criteria of kin relatedness in that it has a genetic link to its parents; however, it is also a microscopic entity made in a lab. It is fully human, but it is also potential research material (Franklin 1995). Building on Franklin’s discussions of liminality, Millbank (2017) explores how women expressed such a contested location as something of-the-body but not within the body, neither self nor other, person nor thing. Ellison and Karpin (2011) discuss an embryo’s liminality as something between life and death through a discussion of “compassionate transfer”, which involves thawing the cryopreserved embryos, placing it in the woman’s vagina or cervix where it cannot develop, or uterus at a time when implantation is unlikely. This ritual emerges to manage the dynamic categories of life and death (Ellison and Karpin 2011). It is such liminality of the embryo that makes embryo research a field of contestations, providing “a template of cultural definitions of what it is to be a person and what makes a kinship tie” (Franklin 1995, 337). Such disputes have manifested in discussions about the embryo as not life (in favour of embryo research) and the embryo as human life (hence considering embryo research as problematic) (see McMahon et al. 2003; Melhuus 2015), showing the negotiations of the life status of liminal entities (Roberts 2011). In this sense, as argued by Parry (2006, 2351), embryos move through different representations as potential lives, kin or biological material in part as determined in local contexts.

Building on this notion of liminality as potential lives, kin, relations and research material, we explore the perceptions that couples undergoing IVF have about the embryo made in the process of IVF, and we examine their thoughts, motivations, discussions and acceptability of disposition decisions as potential embryo donors. We aim to demonstrate how perceptions take place within a complexity of societal factors that involve politics, science, medical technologies and IVF processes and practices as well as patient experiences of IVF and religious or nonreligious views and ideas about kin and relatedness. Finally, we explore how the meanings attached to the embryo influence the views and acceptability of its various uses. Importantly, couples in this study were in the middle of treatment so donation of frozen (viable) embryos to research was not yet an option, just fresh non-viable embryos. Equally important is that in Norway donation for reproductive use by others is banned–also shaping the options available. Such regulations and practices existing in Norway will be further explained, as well as identifying the ways in which the embryo was perceived in the Norwegian political context in the 1980s and 1990s. Then, we present how the couples participating in our study conducted in 2019 come to make their decisions and factors influencing their perceptions about the human embryo. According to the results of our study, we suggest that a shift from a perception of the human embryo as life at conception towards a perception of the human embryo coming into being during implantation is taking place—a perception that, in its wider context, most likely holds implications for disposition decisions and intentions.

This article results from the ethnographic study, Assisted reproductive technologies and epigenetics: an ethnographic study of prospective parents’ experiences, perspectives and imaginations in Norway, which aims to understand the experiences, perspectives and imaginations of prospective parents about contemporary assisted reproductive technologies (ART), practices and treatment within Norwegian society. This ethnographic study is part of a wider project, Epigenetics and bioethics of human embryonic development, and this particular study draws primarily on in-depth interviews and observations of couples currently in treatment for infertility in a hospital setting. Throughout 2019, twenty-five couples were interviewed about their experiences and thoughts on issues relating to childlessness; infertility; reproductive technologies, care and treatment, including how they experience and perceive the status of the embryo and the disposition decisions and intentions. Five health professionals working at the clinic were also formally interviewed, along with conversations throughout the research period.

Eighteen couples were interviewed once; these couples had different socioeconomic statuses and ages (twenty-five to forty-five years), had various cultural backgrounds, ethnicities, and sexual orientations (including three lesbian couples), and were in different stages of treatment. These interviews lasted between one-and-a half and three hours, and both partners accepted the invitation each time, except for one couple, in which the woman decided to participate alone. Seven couples were observed throughout their first IVF cycle, from the initial consultation to embryo transfer; however, all seven couples did not reach embryo transfer because treatment was disrupted for various reasons (spontaneous pregnancy, medical or personal reasons). In-depth interviews with the couples were conducted at the beginning of treatment and after embryo transfer.

Observation of patients during treatment allowed the researcher to follow over time how the couples talked about and related to the process and how they talked about and reacted in practice to making embryos outside of the human body, the fertilization process, transfer, cryopreservation and embryo donation. In addition, the interviews allowed for in-depth conversations about the moral status of the human embryo and about how the couples thought, viewed and talked about the embryo made in vitro. Interviewing the couples together allowed for discussions between the two, as many of the questions posed were not necessarily something the couple had discussed extensively or even agreed upon. Topics related to the human embryo, such as how the couple felt about making embryos outside of the body, whether they perceived these embryos as life, or when the embryos were considered life or human, were discussed in various ways throughout the interview. We asked the couples to describe how they visualised the embryo. Other topics included the technology of cryopreserving embryos and embryo donation to research. We discussed gamete donation more broadly, including embryo donation to other couples, which also provided insights into ideas relating to kinship and family formation. All these topics shed light on the perceptions and views held by the couples about the human embryo, its uses and the topics of research and donation.

The interviews with patients were tape-recorded and transcribed, and field notes of observations were recorded and organised. Health personnel at the IVF clinic received information about the project, and none objected to the presence of researchers during consultations at the clinic. All couples and formally interviewed health personnel gave their written informed consent. Ethical approval was obtained from the Norwegian Centre for Research Data.

The process of analysing the data emphasised descriptions of contexts, underlying meanings, patterns, or themes emerging from the data (Angrosino 2007). Reading and re-reading of the transcriptions and notes on observations enabled the researchers to familiarise themselves well with the data and capture the context of people’s experiences and views (Parry 2006). Central in ethnography, the analysis included and considered different analytical perspectives and comparisons, existing literature and interpretations of others (Angrosino 2007; Stewart 1998). The findings for this study, thus, must be seen in the context of the history and politics of biotechnology and embryo research and reflect how the perceptions of embryos and embryo donation have been conceptualised in other countries around the world.

The past decades of IVF technology have paved the way for lab-made embryos and embryo research, and the status of the human embryo has been intensely discussed among politicians, theologians, bioethicists and scientists. Yet few have explored how couples undergoing IVF conceptualise their embryos in a Norwegian context. In the late 1990s Roalkvam (1998) described that the fertilised egg in Norway was seen as incipient life and that discussions about the freezing technology asked what exactly was put in the freezer. Roalkvam (1998) also noted that couples undergoing infertility treatment found it problematic not to be able to give life to the embryos in the freezer and reported that one woman expressed that not giving the embryo life would be as emotionally difficult as having an abortion.

In our conversations with couples undergoing IVF some 20 years later, the views about the fertilised eggs or embryos seemed to have changed. In discussing when life starts and when the embryo is viewed as human, the majority of the participants in this study did not yet dedicate human life to the embryos made in petri dishes. The views ranged from embryos being something alive or something with potential for life to living cells or references like amoeba, bean, lump of cells and piece of DNA.

Silje was in her first IVF cycle with her husband and was one of the participants who reflected that she saw the fertilised eggs as something alive: “It is a living cell. It is something alive that is placed inside me and hopefully develop into a human being.” She also pointed out that the IVF makes the fertilisation process more visible and that she knows that the embryo is conceived and somewhat alive when it is transferred to her uterus. Silje and her husband contrasted this experience with their first pregnancy, in which they did not find out about the pregnancy before week ten. Although the embryo was something alive, Silje did not yet consider it a human being, as it only had potential to start developing into a human being after being implanted. Like Silje, Ella, who was in her second IVF cycle, also ascribed some form of life to the embryo she had recently transferred. When asked if she thought of the embryo as human or life, she responded, “I do [consider it life]. The little embryo I carry now, I have talked to it all day long.”

Her husband Eirik looked surprised and did not agree. He answered, “Oh no, I am not quite there.” Ella followed up, laughing and saying, “I really want it to attach to the womb. I have said we will be good parents [laughter]. I know it is irrational.” She ascribed some form of life to the embryo that had been transferred, yet she also placed a lot of emphasis on the implantation process and prayed that the embryo would attach.

Johnny and Mathilda, who were in their first IVF cycle, also embarked on a discussion of what constitutes human life and when an embryo becomes a fetus or a baby. Johnny explained his view on the topic:

There is potential for life at least. By definition, it is life since it is cells that are alive. But we kill cells when we eat food for example, so why are these cells suddenly much more valuable than other cells? I think it is not human until they grow in someone's belly and become a human being who is born.

Mathilda followed up by also referring to the IVF process:

It is very difficult to define when it goes from being an embryo to becoming a fetus to becoming a baby. It is a gradual transition...but when it comes to the embryos in the lab, I do not think of it as a baby. It is the precursor to what can become a baby. For my own part, there is some psychological protection in the process.... I cannot begin to think of an embryo that did not survive thawing as a baby who died, then I go crazy. I have to think that embryos are embryos, a blank canvas or an empty starting point. It is only when it grows inside the womb that it can develop into a baby.

Mathilda and Johnny adopted the gradualist view of the development of the embryo and fetus and noted that not looking at the embryos as potential babies is a way of protecting against the emotionally difficult state of IVF treatment. Like Ella and Silje, though, they attributed growing inside the womb as a point of reference for determining some form of human life.

Anita, also in her second IVF cycle, was clear in her views about the embryo. When describing if she saw the embryo as human life, she said:

No, the embryo cannot make it on its own. It can only develop to be something after implantation in the uterus. There, life really begins to develop. Before that, when it is just an embryo and not yet implanted, it is just a lump of cells. It is a mix of two people, but it is not viable until it has come a step further.

She also referred to the implantation process and explicitly saw the embryo as a lump of cells before implantation. Sofia, who was in her first IVF cycle with her husband Pierre, was also clear that implantation is her point of reference when discussing life:

Not to me before it is on the inside of another life…or when it has implanted, when you know it has attached to the womb in a way.... Those two weeks are an uncertain phase…. You cannot walk around and think you are pregnant the first two weeks, then you go crazy…. It is nothing until it is proved it is there.

Pierre was a bit more reflective on the topic and did consider it something living:

I feel that it's more like living processes, not necessarily life, if there is a difference. But some living processes that happen to a greater degree than it would if it just happened inside you [his wife] for some strange reason. Because it gets so visible, it's kind of taken out of some weird context. But I do not think there is life immediately.

Pierre points to an interesting aspect of IVF, the fact that embryos are made outside the body and as such are made visible, yet at the same time they are not given the status of life. Such views were also made clear in an interview with Lene and Peder. At first, Lene was quick to provide her view of the embryo as life or not: “To be honest, I do not think so.” Peder followed up by stating that it is a “piece of DNA in a dish.” Lene continued by explaining, “For my part, perhaps when you know that you are pregnant and are over the uncertain phase…at the legal limit of induced abortion. In that period, I do not consider it life or a baby.” She also explained, though, that “when I think about it a bit more, maybe it has some potential for life, but when you hear the heartbeat, or when you know the heart beats, you can hear that quite early. If I had heard that, I would think that it was life.”

The couples, in various ways, demonstrated how implantation and a confirmation of the attachment of the embryo to the uterus wall were for most deemed the start of life—but not necessarily deemed a human being. As Lene noted, knowing or visualizing the heartbeat through ultrasound was for many the strongest confirmation of human life, although exactly when the heart starts beating and when you can visualise it were often unclear. Others referred to the importance of being past the uncertain phase at week twelve and pointed to that time as when the miscarriage risk decreased and as the legal limit for induced abortion in Norway. As such, conceptualizations of life and when it becomes human reflect a gradual process linked to medical technologies, such as pregnancy testing and ultrasound, and to political factors. Furthermore, descriptions by the couples of the fertilised egg or embryo as a cell that has divided a few times, as something living that has potential but is not viable and is not yet life, speak to scientific understanding rather than religious thought. With a few exceptions of Catholic and Muslim beliefs and one woman who expressed some agnostic thoughts, none of the participants defined themselves as religious. Most participants were concerned with demonstrating that they did not have a religious affiliation. Arguably, their description of the embryo as a cell provides a competing discourse, a scientific construction that can compete with the construction of incipient life as sacred (cf. Flatseth 2009).

Given Mathilda’s and Sofia’s quotes about the context of infertility and IVF, to grant the embryos human life or to think of them as babies is too difficult in a process that often involves several failed attempts of becoming pregnant. The IVF process makes visible the fertilization process, and not granting life to the embryos immediately is a way for parents to emotionally protect themselves. Couples consistently pointed out that the waiting time between the transfer and the pregnancy test was particularly tough. A few attached some form of (potential) life to the transferred embryo, but the confirmation of pregnancy was for most the start of life; the uncertainty of the result of treatment at that time was reduced (despite entering an uncertain phase in terms of miscarriage risk). Furthermore, the language used in IVF not only includes a medical vocabulary such as cell division and blastocysts, but also focuses on implantation and attachment to the womb. That phase cannot be controlled, as reflected by language such as “fingers crossed that it will attach this time” or, when successful, “on the second frozen embryo transfer, it attached.” Arguably the view about the embryo is influenced by the IVF process itself and, for many, recurrent failed attempts and experiences that life is not life until implantation is confirmed, and milestones that are shaped by science and politics.

These views about the embryo as not yet life, are connected to discussions about embryo donation for research, which is discussed in the next section.

Expressed in various ways, couples in this study embedded in a Norwegian context do not perceive their pre-implantation IVF embryos to be human life yet and rather dedicate the start of life to a successful implantation. This view of the pre-implantation IVF embryos as not yet life indicates a shift in the perception of the human embryo or the fertilised egg from incipient life—human life at conception, a dominant concept in the discussions of embryo research in the 1980s and 1990s—to potential life or life represented by implantation in the woman’s uterus and a positive pregnancy test. In the 1980s and 1990s, the role of science was modest or absent in the political debates about the status of the fertilised egg (Sirnes 1996), whereas, in our study, science seemed to contribute to the dominant understanding and view of the fertilised egg or the human embryo as not yet life. The role of science is visible both in the use of scientific arguments in political debates leading to the legalization of embryo research in 2007 and onwards and in the way that couples currently using IVF technology described their views of the human embryo. The couples consistently visualised the embryo as a cell, typically describing it as a circle with circles inside, a picture of the fertilised egg commonly used in IVF. Science is visible through the language of living cells and pieces of DNA and in the way the couples relate to science and research in terms of trust and hope in what IVF technology can provide. The changes in viewpoints seem to have taken place along with increased knowledge about biological processes and IVF technology itself, and, bearing in mind that most participants in this study did not have religious convictions, along with the consideration of science as a competitor to religious connotations.

It seems there is an increased scientific and molecular (cellular) representation of the human embryo, which is also discussed in Flatseth’s (2009) work, who further argues how the notion of fertilised egg cells works to emphasise that we are talking about cells; its plural representation also draws attention away from the individual (Flatseth 2009). Thus, a scientific view of eggs and sperm, fertilised eggs and embryos influences the way we see the embryo that is made outside of the body. According to Melhuus (2015, 131), the embryo is removed from its localized origin and pictured as something out there and not internal to the body. Outside of the body, the embryo exists in a liminality, as a potential research entity and a potential kinship entity, as pointed out by Franklin (1995), exactly in a contested location between science and nature. The embryo is not yet a human life, and it is somewhat a microscopic entity with the potential for both research and pregnancy. Being on hold, as a participant said when describing the frozen embryo, illuminates the liminal existence, the either/or state of the embryo.

When the embryo is transferred, it is something living, with the potential to become life or not. When implanted, and when pregnancy is confirmed, the fertilised egg or embryo is granted some form of life and thereafter gradually becomes a full human being. As such, the process is seen as continuous and gradual, as also described by Flatseth (2009). How medical technologies such as ultrasound influence our perception of the fetus as an individual is commonly argued (Ravn 2004). In our study as well, the definition of life and the move towards a gradual status as a human are linked to technologies, biomedicine and politics. Importantly, however, as pointed out by Krones et al. (2006, 18), there is probably a cluster of attitudes in society, of opinions on the beginning of human life, on general values and on religious feelings that might be facets of different ideas of the human. In their study, the majority of the German population, as well as couples who experienced IVF and created embryos in vitro, saw implantation of the fertilised egg into the uterus as the crucial process that transfers the biological entity into human life (Krones et al. 2006). According to Roberts (2011), most North American and Western European couples undergoing IVF believe that the transfer of an embryo to a woman’s uterus activates the possibility of an individual; such belief is also present in Israel (Raz et al. 2016). Our study included similar viewpoints. Investigation of the viewpoints of the Norwegian public—not only those influenced by being in the middle of the IVF process themselves—would be interesting. Importantly, IVF couples have often, through many failed attempts, experienced the lack of life in an embryo when it does not implant and lead to pregnancy. These experiences arguably influence the way the couples speak about and relate to the pre-implantation embryo.

Such views of the pre-implantation embryo and the tendency to dedicate the start of life to a confirmed pregnancy shed light on why donating embryos to research is rather unproblematic or at least accepted, whereas the thought of donating to other infertile couples is perceived as problematic and difficult—as kin relations with the embryo starting in another life. When the embryo is implanted in a woman’s uterus and pregnancy is confirmed, human life activates and the embryo becomes a potential kin. Thus, to become kin it must implant; then mothers, fathers, children and siblings are created. These definitions of kin define social relations and are central to a couple’s understanding of what constitutes family, relations, and responsibilities.

As our study demonstrates, when couples discuss donation to others, the embryo is considered a full version of us, 100% biological siblings to our children, our genes and our child. The unique combination of the genetic material of the two parents representing the embryo is significant, also reflecting the genetic criteria of kin relatedness in a Western context (Franklin 1995). However, when the embryo is donated to research, this genetic composition is not of importance. Put differently, although the couples think that embryo donation to other couples should be legal, the problem of donating to others reflects the potential for full biological siblings to their future or existing children and represents a complete set of genes from the couple, which could develop into a life by implementation in (another) uterus. The potential relationships based on genetic relatedness and the implications of having a full genetic child growing up with another family characterise the reflections surrounding the donation choice. The lesbian couples using donor sperm argued the same way about donating to other couples. For them, it was primarily about siblings, but also the idea of the child as theirs, despite missing the genetic link to one parent. It does not mean that the genetics are not of importance, but the meaning placed on genes is adjusted when establishing the child as family and kin.

Constructing the embryo as kin and thus making it problematic to donate to others has also been documented elsewhere (Goedeke et al. 2017); in New Zealand, the importance of such genetic connections carries ongoing social ties that have implications for embryo donation to other couples (Goedeke et al. 2015). Issues of full genetic relatives or a full genetic sibling has also been discussed in studies such as de Lacey (2005), McMahon et al. (2000) and Paul et al. (2010). Millbank et al. (2016), however, show that embryo donation was a desired option among their respondents in Australia; in contrast to what has been previously suggested about donation as difficult and the least preferred or as avoidance of the worst outcome (Hammarberg and Tinney 2006; de Lacey 2007). In explaining this contrast, Millbank and colleagues (2016) point to different regimens of embryo donation and explored how laws and policies shape experiences but also noted that donors in their study did not prioritise genetic relatedness in their experiences of kinship. Both New Zealand and Australia allow embryo donation to infertile couples, yet there are different legal and counselling regimens. Interestingly, in a study in Sweden conducted when embryo donation was not allowed, nearly three-quarters of infertile couples with surplus embryos were in favour of embryo donation to infertile couples (Wånggren et al. 2013). While their study acknowledged that such views might change when confronted with the choice in real life, our study also showed that the majority were in favour of allowing embryo donation in principle, but that did not mean that they prefer it themselves. Laws and policies, and what is possible or allowed, might affect people’s preferences, thoughts and actions. The couples in this study, however, had not given embryo donation to other couples a lot of thought, as they were in the middle of treatment using their own embryos. Yet, they had strong views on how they would act towards it; supporting its legalization, but not willing to donate themselves.

In our study, the embryo’s status as life at implantation, together with a biogenetic understanding of kinship, sheds light on why embryos are preferred given to research rather than to another couple. The state as not yet life before implantation and the consideration of implantation as activating human life contribute to the liminal existence before transfer and reinforce the embryo as a possible research entity. Donating to research as the best option is also understood in the context of science, trust, solidarity, reciprocity and pragmatism. To donate spare embryos to research, deriving from a reciprocal obligation to give something back, was also noted by participants in a study by Fuscaldo and colleagues (2007). Donating in the context of a desire to help others and advance scientific and medical knowledge has also been shown by McMahon et al. (2003), although such solidarity and reciprocity have been problematized as if feelings of indebtedness towards the clinic helping them may make people donate to research to give something back (Scully et al. 2012). In our study, IVF users strongly supported increased scientific knowledge about human reproduction and improvements to IVF technology, making discarding surplus embryos wasteful. It has also been argued that a perception of waste must be seen in the context of the efforts involved in making them (McMahon et al. 2003; de Lacey 2007; Provoost et al. 2009). Such pragmatic arguments of not wasting material were also prominent in the discussions about allowing embryo research in 2007; some aspects of citizens’ views about IVF practices seem unchanged today.

How IVF couples relate to their surplus embryos in different global/regional contexts has been extensively discussed. In different local contexts, embryos have different representations as potential lives, kin or biological material, as noted by Parry (2006). As the literature suggests, the choices people make on this topic are often based on grounds beyond religion or science. As our study indicates, these choices are strongly relational and are also shaped by ideas of kinship and relationships. Roberts (2011) has shown that, in Ecuador, the embryo is considered an integral part of family, and frozen embryo donation constitutes abandonment. Consequently, these patients prefer to discard embryos rather than freeze them for a future away from their relations. It is not life that is central but the group that would abandon one of their own (Roberts 2011, 232). In our study, we argue that, along with a persistent understanding of the significance of kinship, the embryo becomes a liminal kinship entity as described by Franklin (1995); it is not yet human life but holds the potential for important relations between the couple (as a representation of them) and between siblings. Before implantation, though, the embryo is a tiny, cellular entity in a lab that can be donated for research; it is not yet life but has the potential for life. Interestingly, such views might support expansion of biotechnology research on the pre-implantation embryo, and the couples in this study also persistently supported the legalization of embryo donation to other couples. Yet as shown, when implanted it becomes kin; and mothers, fathers, children and siblings are created, making such donation regimes difficult in practice. As such, the reflections on the human embryo and disposition choices our study have identified work on the interface of science and technology, of politics and religion, of IVF experiences, and of kinship and relations.