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Thematic Cluster: Cross-Border Healthcare: The Interaction between Countries, Cities, and Cultures in Healthcare

Assisted reproduction: Brazilian heterosexual couples' testimonies on the care of specialists

Reprodução assistida: depoimentos de casais heterossexuais brasileiros sobre o “cuidado” dos especialistas

Reproducción asistida: testimonios de parejas heterosexuales brasileñas sobre el “cuidado” de los especialistas

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ABSTRACT

In this article we examine experiences and representations of care, as expressed by couples’ testimonies on their relationships with assisted reproduction clinics and specialists in Brazil. Our goal is to capture how care is recognized in the context of highly complex technologies. The intersections of affect, technology and the notion of God comprise hybrid elements that connect emotions, science, technology and (medical) specializations, and are recognized aspects of this type of care. Gratitude to God and gratitude to specialists are conjoined within a specific recognition of care as part of the expanded reproductive activities of our times, concerning both the bodies of women in search of maternity and of men in search of paternity, as well as embryos and gametes. These relationships of care are established through a process in which specialists become recognized as those that provide shelter from pain, hardship, waiting periods, frustrations and disappointments, for couples who have unsuccessfully attempted to conceive in the past. A carefully tended relationship of trust is forged, increasing clinics’ and specialists’ capacities to offer solutions for attaining pregnancy.

RESUMO

No texto escolhemos construir relações com a interface do cuidado, conforme o mesmo se expressa nos depoimentos vividos pelos casais em suas relações com as clínicas e os especialistas no Brasil. Nos interessa perceber como o cuidado é reconhecido no contexto das tecnologias de alta complexidade. As intersecções entre afetos, tecnologia e Deus formam elementos híbridos que conectam sentimentos, ciência, tecnologia e especialidades e são aspectos reconhecidos destas dimensões de cuidado. Gratidão a Deus e gratidão aos especialistas se unem em um tipo específico de reconhecimento de cuidado que é, contemporaneamente, parte de um fazer reprodutivo expandido, tanto sobre os corpos de mulheres em busca de maternidade como de homens em busca de paternidade e também sobre embriões e gametas. Estas relações de cuidado se estabelecem à medida em que os especialistas são reconhecidos como os que acolhem a dor, a luta, o tempo da espera, as frustrações e os desânimos, que foram aumentando ou não, na medida em que estes casais já fizeram muitas tentativas sem sucesso de busca por filhos, antes dos depoimentos postados. Forja-se uma cuidadosa relação de confiança que aumenta em termos da capacidade da clínica e dos especialistas de oferecerem soluções e condições de efetivação de uma gravidez.

RESUMEN

En este artículo, elegimos construir relaciones con la interfaz de cuidado, como se expresa en los testimonios de las parejas en cuanto a sus relaciones con clínicas y especialistas en Brasil. Estamos interesadas ⁣⁣en comprender cómo se reconoce el cuidado en el contexto de tecnologías altamente complejas. Las intersecciones entre los afectos, la tecnología y Dios forman elementos híbridos que conectan los sentimientos, la ciencia, las intervenciones y las especialidades y son aspectos reconocidos de estas dimensiones del cuidar. La gratitud a Dios y la gratitud a los especialistas se unen en un tipo específico de reconocimiento del cuidar que es, al mismo tiempo, parte de una actividad reproductiva ampliada, tanto en los cuerpos de las mujeres en busca de la maternidad como de los hombres en busca de la paternidad y también en los embriones y gametos. Estas relaciones de atención se establecen a medida que los especialistas son reconocidos como aquellos que acogen el dolor, la lucha, el tiempo de espera, las frustraciones y los desalientos, que han aumentado o no, ya que estas parejas ya han hecho muchos intentos fallidos de concebir, antes de los testimonios publicados. Se forja una relación de confianza cuidadosamente mantenida, que aumenta en términos de la capacidad de la clínica y de los especialistas para ofrecer soluciones y condiciones para llevar a cabo un embarazo.

1. Introduction

Research on assisted reproduction using a variety of socio-anthropological and human sciences perspectives, and in particular work focused on the laboratory context, has recently gained visibility. This includes work that looks at the desire for having children and kinship (Vargas, Russo, and Heilborn Citation2010; Tamanini Citation2003, Citation2009; Nascimento Citation2011), the issue of rights of origin (Thery and Leroyer Citation2014), biotechnologies and kinship (Porqueres Citation2009; Citation2016; Carsten Citation2000, Citation2014), and infertility and infecundity (Diniz and Costa Citation2005). Likewise, there has been an increased interest in studying the array of technologies tailored for lesbian motherhood (Amorim Citation2018; Machin Citation2014b), homoparenthood (Tarnovski Citation2017; Courduriès and Herbrand Citation2014), trans-parenthood (Gross Citation2015), single mothering, and the legal issues (Moás and Vargas Citation2012). Moás, Seixas, and Vargas (Citation2016) perceive assisted reproduction as a consequence of large-scale advances in biomedical science, offering solutions to reproductive problems, carried out by specialists, individuals and couples, and upheld by claims of the legitimacy of the desire to conceive. SurrogacyFootnote1 has been taken up more recently by Hochschild (Citation2012), Merleau-Ponty (Citation2016) and Puleo (Citation2017). Within Brazil, there are studies looking at the destination of embryos within clinics (Allebrandt Citation2018), their market dimensions, costs, and the tensions of risk-taking (Corrêa Citation2001; Tamanini Citation2006; Silva Citation2013), and a similar focus can be seen in international studies such as those that have been conducted by Tain (Citation2013), Spar (Citation2007), Ikemoto (Citation2010), and Waldby and Cooper (Citation2014).

Protocols and processes of clinical intervention have been modified following a large number of studies on gametes, embryos, endometrium and hormones. Onco-fertilityFootnote2 has appeared as a new specialization in fertility preservation, with a different normative approach when compared to the rise of similar procedures in the 1980s. Specialist procedures have changed over the last 15 years, particularly for gamete and embryo procurement and practices of infertility diagnosis, including reproductive arrangements with gametes and uteruses (Andrade and Tamanini Citation2016).

Gametes today are part of a multi-million-dollar market guided by logics of regulated and non-regulated supply and demand. There is great interest in human body parts such as sperm and eggs, and others as well. Thus, uteruses and embryos also become actants in the circulation and sale of biomaterials in laboratory and clinical contexts, as analyzed by Mamo (Citation2010), Waldby and Cooper (Citation2014), Machin (Citation2016) and Machin and Couto (Citation2014). The research that is cited here is highly relevant, demonstrating the complex and intersecting aspects of the treatments that undergird the quest to bear children. This goes beyond questions of privacy, embracing complex networks for the circulation of knowledge, gametes, technologies and global industrial and pharmaceutical research.

In this paper, the focus will be on care, as expressed within couples’ testimonies on their relationships with clinics and specialists. We are interested in how relationships of care are recognized by couples, even though 7% of women give testimony solely in their own name or speaking for their partners as well, or even in the name of the unborn child.

Care is characterized as gratitude towards specific clinic professionals, who are recognized as engaging in empathic, affective, emotional and “loving” relationships, as well as toward the entire medical team and to God for having provided them with knowledge, technology, professional competence and ethics. The acknowledgement of having received support for their desire to bear children as well as technology to make their dream come true is also voiced. These enunciations also become a space for the circulation of values regarding family, maternity, paternity, and kinship but also of assuming the clinic, lab and medical procedures as necessary for the solution of infertility problems.

Relationships with the specialists and their clinical practices are permeated by dreams, imagination, the pain and frustration of childlessness and long waiting periods. These processes have physical and emotional dimensions. Their point of departure, as evidenced in the testimonies that patients post on clinic websites, is imbued with affect, and the acknowledgement of a web that is built involving different specialties coming, in turn, from different angles, as well as decisions that must be made through the joint efforts of interdisciplinary teams.

This acknowledgement of the forms of care is not free from contradictions. Testimonies also speak of the tensions and struggles of treatments previously undergone. We are fully aware that the acknowledgement of the care that clinics provide conflicts with positions informed by perceptions of the problems inherent in the medicalization of women’s bodies, procedural risks to women and infants, and the excruciating wait and innumerable frustrated expectations that also appear in these narratives (Tamanini Citation2006; Laborie Citation1992a, Citation1992b, Citation1993; Bezerra Citation2016; Fito Citation2010).

Nonetheless, these networks of specialists and couples may also be seen as building forms of support to bring the desire to bear children to fruition, surpassing issues of illness and the risks of medicalization. Perceptions of care are potentialized within the narratives posted, with couples describing their objectives as “encouraging others who are also suffering from childlessness” so they will not “give up on their desire to become parents.” These relations become particular ways of being in the world, of offering and providing care (Tronto and Fisher Citation1990).

2. Care, our point of departure

Amongst the different perspectives that frame research on care, we highlight those on the ethics of care inscribed within 1980s feminist discussions on difference, as explicitly expressed in Carol Gilligan’s book, In a Different Voice (Citation1982). Gilligan’s significant contribution lies in the argument that only those subjects living in conflictive decision-making situations have the authority to demarcate what is ethical and moral, a position that clearly conflicts with Western universalist ethics and its modes of knowledge production. Gilligan also invalidates patriarchal, sexist and universalist perspectives, endorsing women’s judgements and awarding them a place of centrality that recognizes women as capable of moral decision-making, in light of their own experiences. Preoccupations with the democratization of care also provide important lessons, given their links to theoretical marginality, conceptual difficulties and support for practical aspects vis-à-vis personal needs. Practices of care are feminized, reduced to private dimensions and stratified by gender and class (Sorj and Fontes Citation2012; Hirata et al. Citation2010; Tronto and Fisher Citation1990).

It is at this point that the lacunae of conventional notions of care must be dealt with, reframing conceptualizations of justice in order to denaturalize the dependencies and interdependencies that care implies. These elements go far beyond the desire for well-being, economic comfort and support, or even the question of keeping someone affectively and emotionally dependent; rather, they necessitate and become part of the feminist discussion on the ethics, politics and democratization of care.

We follow Tronto (Citation2007), for whom care defies the view that morality begins with rational and autonomous individuals who confront each other over the execution of moral rules. Rather, autonomy is posited as a problem which people have to face constantly, in relating to others who are similar or very different from themselves, with those they help or upon whom they depend – in which case their own vulnerabilities are also at stake. Thus, this way of conceptualizing care has nothing to do with romanticized perspectives. It is clearly not a matter of abnegation, as Noddings (Citation1980) makes clear; neither does it mean rejecting relations between science and technology or with the market. The right to make decisions as to what one pays for may also be included in relations of care (Tronto Citation2007).

Likewise, for one to be able to care for others, a connection is required between them, the nature of which constitutes a problem for any ethics of care. It may be tense and charged with ambiguous contexts, contradictory sentiments and even the flawed ability or faulty conditions to attend to the needs of the person or persons who need or want to be cared for. In the case of assisted reproduction, care depends on actions, knowledge and technologies. The ability to provide care involves the coexistence of mismatched feelings, vulnerabilities, markets, technologies, professional skills, protocols, desires, within a context of persistent tensions. It poses challenges regarding autonomy, freedom and reproductive justice, the desire to have children and the organization of couples' parenting projects within a complex society (Kittay Citation1999).

Morality is an ethical and political question to be posed in relation to care and the everyday experience of pain and suffering connected to childlessness. Within this context, Molinier, Laugier, and Paperman (Citation2005) argue that morality is necessarily linked to the everyday; it demands the recognition of relational experiences, of concrete others within their own histories, emotions and sentiments, as well as the socially constructed nature of feelings. From this point of view, feelings are connected to life stories, values, desires, decisions, as well as to searches for and selection of clinics.

Care is interconnected to many other phenomena, both conceptually and heuristically. Care is linked to situations of vulnerability, to economic, social, affective, environmental matters, to sexual dependency, as well as State and public institution’s neglect (Benhabib Citation1995), with an interdependency between contingent and situational suffering (Longino Citation1996). These interdependencies are not private or personal, but rather relationships between numerous actants that configure the cultural value of having children.

According to Tronto and Fisher (Citation1990), care is an activity that is characteristic of the human species and includes everything we do in maintaining, continuing and repairing our world so that we can live in it in optimal conditions. This world includes our bodies, our individuality and our development, which we weave together within complex relationships that sustain life and a collective world (Latour Citation2001, 340). Fisher’s position involves four stages of care: (1) concern for someone or something, (2) caring for someone, (3) treating someone and (4) becoming the object of someone’s care. To become concerned with someone or something firstly implies recognition of a need, as the necessary moral quality specific to giving attention to another, or the recognition of others’ needs. It also presupposes accepting responsibility for the work that caring demands, the need for building human and technical capabilities, and a series of other conditions. Becoming a recipient of care means accepting what is proposed, and that one is dependent on care, seeing oneself as vulnerable and dependent. Such a process entails conflict, particularly with regard to authority and autonomy (Tronto Citation2007).

In the field of assisted reproduction, care appears both as problem and need, a profound connection between humans and non-humans (Latour Citation2000, Citation2002) that emerges in the interface of science, technology, belief in God and emotions in order to alleviate the vulnerability associated with childlessness. The boundaries separating the orders of humans and non-humans are broken (Haraway Citation1999; Inhorn and Gürtin Citation2011; Latour Citation2001). Actions aimed at reproductive purposes connect with caring for someone, with additional connections to technology, science, gametes and embryos, and their interdependencies. Caring has more powerful connotations than mere preoccupation. It implies being affected by a problem and giving answers, with an incremented sense of attachment (Puig de la Bellacasa Citation2011). Caring is neither gratuitous nor disinterested, since bodies, persons, feelings, expectations, time and money are all involved. We agree with Puig de la Bellacasa’s (Citation2011) declarations that social, ethical and political implications have been present in technology from its beginnings. The role of science and technology cannot be argued simply “for or against,” framing them as positive or negative; rather, they are charged with values, concerns and possibilities that shape relationship networks (Latour Citation2004). There is no single heuristics for dealing with these problems through the use of complex technologiesFootnote3 nor for approaching the meaning of the desire for children, families and filiation, maternity and paternity.

The challenges of thinking about care are immersed within a field of controversies and practices that are hermetic and hard to gain access to for those who are not clinical specialists. This suggests the need for an understanding of caring and care based upon the words of those who live through the processes. This would demand robust critique, taking up the phenomenon of the medicalization of bodies that was sharp target of feminist discussions in the 1980s, but this is not presently our focal interest.

We acknowledge the critical, political and denaturalizing place of theories of care and we assume the problematization of dualisms and the denaturalization of essentialisms that deal with human reproduction by focusing on instincts and natural desires. The elevation of maternity to the status of a sole and linear pathway for women’s lives, as constructed through the testimonies of specialists and the experiences of couples and women as described in ethnographic research, has already been problematized by Tain (Citation2013), Silva (Citation2013) and Tamanini (Citation2015). To look at assisted reproduction focusing mainly on the domains of risk and economic costs, such as considering the posted material primarily as publicity, would be a misrepresentation of our goals.

We understand that the marginalization of discussions on the right to have children and the search for them must say something about care, given the efforts it involves on the part of the couples. When couples’ testimonies make reference to a “blessed clinic,” to hope, to professionalism, when they express gratitude or speak of the love they have received, these terms are meant as tools to encourage other couples not to give up on their dreams.Footnote4 These couples are not only speaking of a lack of gametes, the needs of uteruses and embryos, or the preservation of fertility. Couples are speaking about their projects, pain, waiting periods, fears and how much of their anguish is placed in the hands of specialists because of trust- or not placed there, because of a lack of trust. These men and women are speaking to us about care. They are physically and emotionally tired, in the aftermath of numerous unsuccessful attempts. They tell us that some of the clinics were not up to professional standards, lacking in technology, knowledge, confidence and support, as well as how they spent money on unsuccessful attempts. As expressed by one of the couples (Citation2017), “there were seven years of a lot of struggling, a lot of tears and expectations. A lot of treatments. It is now a challenge for us and for our team […] so devoted to and passionate about what they do.” Within the context of these hybrid connections between feelings, emotions and beliefs, one must think about such relationships judiciously, as they appear within couples’ testimonies; as set within the background of assisted reproduction and its connections to technology, emotions and affects, but also in terms of the empathy and shared suffering that links specialists and couples as a sort of Latourian “hybrid collective.”

3. Methods and materials

We analyzed 284 testimonies out of the total 934 that were available online, posted on the 61 internet sites of Brazilian clinics affiliated with the Latin American Network for Assisted Reproduction at the time of data collection in 2019.Footnote5 Only postings made between 2010 and 2017 were considered as eligible for our sample, and any testimonies that were undated were automatically discarded.Footnote6 Out of the valid data, all depositions from the Northeast, Central-West and South regions were selected for the final sample and only half of the much more numerous testimonies from the Southeastern region were considered, so as to end up with a roughly 50% contribution from each set. This selection was meant to balance the visibility of contents within the sample, as there is a deep asymmetry in the availability of assisted reproduction services between the Southeast and the rest of the country. For many couples, it even proves easier to travel to the Southeast for treatment than to attempt to find a local clinic.

The couples that provided testimony all appear as heterosexual, married for 8.07 years on average. Treatment had been carried out for an average of 3.94 years. Women’s average age was 38.3 years; men’s average age was not calculated, due to insufficient information. The average age at which pregnancy was achieved was around 38 years old. Infertility causes were described in detail in only 68 of the 294 testimonies, among which the most frequent included vasectomy (or some other male issue), tube obstruction and endometriosis (13 cases of each). Other causes mentioned included myomas, low ovarian reserves, thrombophilia, uterine polyps, ovary loss, tubal ligation, low sperm motility, azoospermia, varicocele, early menopause, ectopic pregnancy, bladder and rectum nodules, ovarian failure, genetic diseases, implantation problems, and other undefined causes. During pregnancy, complications experienced included abortions, internal hemorrhages and tube loss, movement of the gestational sac, physical and emotional stress, weakness, acid reflux, intrauterine growth restriction, preeclampsia, bleeding, anxiety and depression. The number of failed attempts to achieve pregnancy varied significantly but was more than two in the majority of cases. Twin gestation was mentioned in 50 testimonies; gamete donation and egg reception were mentioned 2 and 6 times, respectively.

3.1. Care, in couples’ own words

The couples in this study, suffering over their inability to bear children, sought clinics while confronting the pain, fear and anguish of a potential diagnosis of infertility. After a positive treatment outcome or the birth of the child, they forwarded their testimonies for uploading on clinic websites. As one couple put it “Our lives are filled with love. It’s almost like beginning life all over, learning to live wearing your heart on your sleeve” (2017).

Testimonies are far from homogeneous. They feature a wide variety of expressions of gratitude; they narrate painful processes, losses, and even situations of poor treatment at the hands of other clinics and specialists before positive test results were finally achieved. This is illustrated by a person who reported that “After almost five years of failures, using different types of treatment including IVF in another clinic, I found Dr. […] From the very first interview, he emanated trust and integrity and filled us with hope” (2016).

A first characteristic of couples’ response to the care they receive is the need to narrate, thank, and recognize the love, attention, information and concrete solutions that were given to them. When their yearning for a child and suffering over childbearing difficulties are met by professionals who are good listeners, concerned, respectful and empathic, couples feel they have been cared for (Tronto and Fisher Citation1990). As one couple (2016) put it,

When we found [ …] we’d already been married for two years. It was reading the testimonies where it all began. And how we dreamed of this moment, of us leaving a record of our story here. When we ran into difficulties in getting pregnant, we began to look for a clinic that would address our emotional needs and financial concerns. It was through the Internet that we discovered [them]

When people recognize themselves as recipients of care, because their needs have been addressed, the moral qualities of care are also recognized. This appears within testimonies in two basic ways. First, it is expressed when couples, or women posting in the name of both partners, speak of being loved in several ways – physically, emotionally, economically and spiritually. According to Paperman, Molinier and Laugier (Citation2005) this is fundamental for recognizing the existence of care. Furthermore, it turns into the wish to encourage others, as when a woman writes, “I leave this testimony to give strength to everyone who accesses this webpage, as it was in my own case” (Woman 2016).

A second dimension relates to actions of solidarity towards other women or couples suffering from childlessness. This responds to the criteria of the importance of others, and feeling oneself recognized as important,

I want to express my gratitude for your care and competence in carrying out my treatment. My wish is that God gives you ever more skills to help others like me and to fulfill their dreams of becoming mothers. This was the first try! Thank God we had success, I’m now 17 weeks pregnant and waiting for my little princess! Today I feel like a complete person and you will forever be part of this, my story in the search for complete happiness. May God bless you and may many couples feel the same joy that now fills us. (Woman 2014)

This dynamic of trust and gratitude is present in practically all testimonies: warm reception, kindness and expressions of affection are never forgotten. People swear they will never forget the clinic, and especially not the doctor that accompanied them throughout the treatment process. “I will never forget that you were God’s instrument in fulfilling my dream” (Woman 2017). Professionalism is highlighted when the specialist proves to be honest and empathic, particularly with regard to the barriers that lay ahead:

All issues regarding the right treatment, the uncertainties of each treatment, costs, time, recommended medication, tests, it was all set out clearly on the first day, and as soon as we left the clinic we decided to go ahead with the treatment. The team was superb and the technical and emotional backup was constant. Only someone who experiences these moments of expectation and anxiety knows how important transparency, professionalism, and support are, regardless of the result – because that is what gives us strength to carry on. (Couple 2017)

The content of the testimony is linked to the certainty that there is a baby in utero, that dreams were achieved because of the medical team in that particular clinic, and is part of personal fulfillment. “Today I am a fulfilled woman. […]” (Woman 2015). There is certainty that the specialist team not only constructs such plenitude, but is also part of the process, and of the couple’s destiny and history. “ … Dr [..]’s team revealed itself as a family that is concerned with their patients’ wellbeing” (Couple 2014). These contents of care go beyond the clinical relationship of cure, and even the common clinic-patient relationship itself, to incorporate affect, emotions and expectations of childbearing. Trust is mentioned many times and framed in different ways, a type of trust in expert systems (Giddens Citation1991, 34), alongside the recognition evoked by the oft-repeated “I will never forget you” (Woman 2013).

A third element that we identified in numerous testimonies was the perception of care as representing a relationship between God and the clinic:

It still feels like a dream. How many times have I accessed the site to read happy people’s testimonies, and today I leave mine. After 17 years dreaming of my own child, my prince was born. There was never a night that could stop the sun, or our own hopes from rising. There is no problem so great that it can stop Jesus’ hands from helping us. (Woman 2014)

Thus, care is recognized as a relationship between God, the clinic and its professionals, but unlike the one that González-Santos (Citation2013) identifies in the Mexican context, as making reference to “para-natural” technologies. In the Brazilian setting, these relationships are part of a hybrid that includes hope, bodies, technology, clinics, specialists, faith in God and “family values.” God, clinic personnel, science, prayers, and knowledge are seen as acting in the couples’ favor, both in the experience and in their problems. “Today I am holding in my own hands, the most perfect creation of science and God” (Woman 2016).

Hence, we can argue that this care is recognized from a reflexive position that is not impervious to faith. In the Brazilian case, care flows from a socio-technical network composed of human and non-human actors which takes a detour from the most recognized modern project that asserts that we should “ … not mix heaven and earth, the global and the local, or human and non-human […] The ship is directionless: on the left, knowledge of things; on the right, interests, power and the politics of men” (Latour Citation1994, 8). Rather, within this network, everything appears to fall into place, notwithstanding the suffering, long waits, difficult access, high prices and risks. This hybrid element is comprised of the religious values shared by couples and experts and is not globalized, that is, it does not appear, for example, in the testimonies that this researcher encountered through her study of clinics in the Catalonian city of Barcelona.Footnote7

A fourth point presented within testimonies is the acknowledgement of care enacted in a particular emotional context generated by frustrated expectations and feelings of emptiness emerging from deep-seated hopes regarding childbearing. Thus, this care is understood as a “work of love” in which an activity that was private and intimate is carried out from a specific emotional state (Tronto Citation2007, 287) and paid for in the setting of a laboratory or clinic:

We were very well-received by Dr. […]’s team at the clinic, from the moment we arrived until the much-expected appointment. To our surprise, [our meeting] went better than we expected. We encountered a humanized doctor, considerate and dedicated, extremely committed to the task of fulfilling dreams. (Couple 2016)

Testimonies commonly include something very close to what Noddings (Citation1980) declares as the main characteristic of a care-giver: an alignment of interests with the care-receiver. Couples’ narratives seem to indicate that care-givers’ own interests move backstage; this seems to suggests that the latter are portrayed in ways that correspond to how couples would like to imagine them. “This dream was possible thanks to the dedication and serious work of professionals who will always have our admiration and eternal thanks” (Couple 2017). Couples also rearrange their goals in the search for something that does not yet exist, but is present in their minds and hearts. This is an order of care that is human and transcendent, and when children are born all priorities in life become connected:

After many tries and unsuccessful fights, our dream was realized and today I only can give thanks for the victory this treatment has brought. It was tiring, but all the medication was worth it. The injections left me feeling weak and caused heartburn, but God was in command. (Woman 2015)

Finally, we remark on content dealing with the recognition of care as containing controversies and conflict which emerge around autonomy and vulnerability. Phrases referring to people’s “illness” and “struggle” suggest as much. Many of the emotional, economic and affective investments that are made by those who seek treatment are situated in a liminal space between autonomy and vulnerability – for women, in particular. “Our fight to be parents lasted seven years” says one couple (2016), or in the words of another, “The diagnosis of infertility was a harsh reality we faced, but the possibility of IVF treatment brought hope to our hearts” (Couple 2017). Testimonies oriented towards solidarity and support for other couples include phrases like, “May God bring you much light and health to continue helping other couples” (Couple 2013).

Treatment processes often disallow the posing of questions regarding other life possibilities besides those geared toward childbearing through the path of assisted reproduction. This is a subjective position, and one which generates a particular type of answer. Clearly, clinical and market issues are at stake, as well as an expanding professional field that is here to stay.

Controversial content also includes dealing with the high costs of treatment. Particularly when doctors are attentive, straightforward and exhibit technical and emotional skills, care is highlighted in a way that eclipses payment or the possibility of negative outcomes. This is contingent upon feelings of trust, and of certainty that the right clinic has been chosen. “ … may God continue blessing you who cherish medicine and our dreams more than money; this itself is priceless. Kisses!” (Couple 2013).

These dimensions of care conflate chosen locations, risks and vulnerabilities, and dependency on clinics. Conflict is muted when the couple feels they are receiving love, attention and a solution. If for women and couples, doctors can be seen as “ God’s angels,” they may feel sure that trusting and depending on them, and paying for it, cannot go wrong. Attentive care is recognized and has its price. “I can give only deepest thanks for the kindness and support from everyone […] thank you for treating us as women and not numbers, because everyone who goes through this situation knows the pain, the suffering and anguish” (Woman 2013). At the same time, couples must depend on the clinics’ state of the art resources, which in fact are not always available, and on specialists’ skills, “in their service,” to bring a life project to fruition.

The moral ordering of care is embedded in these great complexities. Specialists forge hope that childlessness will be repaired through protocols of technological and hormonal intervention, gamete and hypophysis process control, making childbearing possible, regardless of fertility issues. Emotional and affective bonds keep clinics and couples connected as family.

Couples recognize care in relationships built through suffering, and in dependence on clinics, specialists, technology and money, as well as on emotional needs for support that at the same time engender new, contextual vulnerabilities. These risks are often minimized when facing the prospect of bearing a child.

4. Final thoughts

According to the couples who make up the base of our study, being infertile is among the worst of all life’s sufferings. Remembering the moment when they discovered it, some used expressions such as “I lost my breath,” “I cried until I could cry no more,” “I didn’t want to believe it.” When the issue is lack of eggs, women feel they have failed their partner and report heartbreak. Such diagnoses are considered as among the darkest moments of life, ones to which no one wishes to return. The situation becomes all the more dire when an egg donation is needed in order to fulfill the wish of motherhood.

The arrival of a baby minimizes the suffering of the past. These are moments of laughter, joking and playfulness, aptly demonstrated by one couple’s remarks on their own tribulations,: “she had to be minheirinha even if we tried four times in Sao Paulo; but pao de queijo is really her thing, LOL” (2013).Footnote8 Thus, the recognition that clinics are involved in care is imbued with a variety of ambiguities. Some of these ambiguities lie in meanings that renew life narratives (Haraway Citation1999). Others emerge within relationships that deal with the importance of caring-for; this means going beyond “cure,” to become a part of someone else’s life, and permitting others to affect you. This care for others – allowing others to affect you – bears material and political obligations (Puig de la Bellacasa Citation2011) that include responsibilities and a practice capable of producing symmetry between humans and non-humans, containing and constituting tensions between technology, affects and beliefs in divine intervention. These collectives, defined by Latour (Citation2001, 340) as “that which collects us all” legitimately belong to the realm of life. This is the manner in which couples seek to live and search for “life,” a term repeated 359 times in the testimonies second only to “God,” mentioned 461 times.

These connections also reproduce cultural meanings that are not value-free. The testimonials analyzed here share assumptions about the need to have children in order to “be a family.” Hence, a reproduction of culturally constructed concepts that define and value “family” posits maternity as something to be sought.

An important dimension of assisted reproduction is the way in which care affects the life of those who give care and those who receive it. Care has affective and ethical connotations that go beyond concern of others. When dealing with perspectives on care, one is not referring to cure, even though this aspect is important in health-related fields, as is the case here. Neither is it a simple question of denouncing the biased practices or the serious harms and risks that are at stake in technological intervention on women’s bodies. We have attempted to demonstrate the wealth and multi-faceted nature of a relationship that must be built based on the recognition of the value of giving and receiving care. Specialists are not merely care-givers because they provide a specific kind of care, but rather are constituted as care providers within a diversity of interdependent relationships that involve its giving and receiving. They are perceived as care-givers by couples when they meet certain requirements which include infrastructure, technology, knowledge and empathy. One single person may take a subjective, technological and material role in services of providing embryos, eggs, and semen, depending on their place within the clinic. Laboratory professionals need each other in forming the interdependencies that are able to produce embryos, gametes and pregnancies, as well as a correspondence between the expectations of what the clinic can actually do and what the couple expects to be done. Hosting the women and couples in need is but the beginning of a process of care that continues until a “positive” – the word used to report pregnancy and consolidated with the birth of child – is attained.

Care can extend out over time, re-enacted through birthdays, clinic parties, and the emergence of parental gratitude that may last for many years. Gratitude for care highlights pre-childbirth involvement with couples, such as the protection extended to women who come to the clinic in a vulnerable state, treatment offers, possibilities for investigating problems, protocols and technological interventions, none of which are ever forgotten. These offerings are understood as care, guaranteeing and anchoring couples’ decisions to look for specialized assisted reproduction clinics. The search may be seen as guided by God, as understood within lived experiences, and by the way that subjectivity is inserted into technoscience (Preciado Citation2018). Belief in God provides support over long periods of waiting and in the face of disappointments, as is also the case in many other contexts. Rather than seeing care in a romantic light, and as if it were disinterested, care involves responsibilities and interests. Tronto (Citation2007, 289) defines it in the following manner:

 … […] Care is not just something that we can measure by the “importance of what it reveals in us … ” nor can it be reduced to an attitude of “thrownness”, “altruism”, otherness, compassion, recognition, etc. Care may be about such attitudes, but it is also about taking responsibility, doing one’s job well, and meeting the needs we are trying to satisfy … 

The practice of “providing children for others” and “making people happy” are arguments that specialists make that approximate them to the notion of “repairing our world” presented by Tronto, as the repair of reproductive losses in childlessness. Yet as specialists devote themselves to mothers, providing children to couples and families, they also generate interdependencies and desires for children, as well as a supply of technologies. In this manner, they also demonstrating how “caring for others” is not simply a matter of moral order. Rather, knowledge is activated and motivation is constructed depending upon actors’ position in the field, their competitive capacity and their technological, scientific and market resources. We analyze these factors, taking part in the construction of an ethics of care that brings value to society and to those toward whom care is directed. Care is loaded with emotions and affects; it has normative aspects, mobilizes interdisciplinary knowledge, engages science and technology throughout the duration of caring relationships and at the same time, is inserted within the realm of pharmaceutical power (Preciado Citation2018).

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Notes on contributor

Marlene Tamanini, is Doctor in Human Sciences from the Federal University of Santa Catarina, Brazil, with a doctoral participation at the CENTRE DE RECHERCHE SENS, ÉTHIQUE, SOCIETÉ/IRESCO/CNRS, in Paris, France, and a leave for postdoctoral research at the University of Barcelona, during 2010. As an instructor, she lectures on Sociology, Research Methodology, Epistemology, Sociology of Gender Relations, Family, Sexuality and Care. As a researcher, she studies technological and biomedical [human] productions in the laboratory and their productive and normative effects on filiation, maternity, paternity, sexual and reproductive rights and on the body. From a gender perspective, she advises students on different issues of sexuality, violence, masculinity, and care, either for undergraduate courses in Social Sciences or for graduate courses in Sociology.

Notes

1 Commercial relations of surrogacy are banned by Brazilian law, but the temporary provision of uterus by female parents is considered a legitimate medical technique used to attain parenthood. Brazilian Federal Medical Council (Conselho Federal de Medicina-CFM) resolution number 2.168/ grants rights to relatives in descending consanguineous degree. Thus, mother, grandmother, sister, aunt, cousin, daughter and niece are considered apt as gestational surrogates, within the context of non-remunerated contracts. Changing rules now allow daughters and nieces to act as surrogates, and single women are now permitted to enter into this type of contractual relationship. CFM Resolution No. 2,168/2017 also allows shared pregnancy, an option previously sanctioned in cases of female homosexual marriage. The cases that fall into this category are those in which the embryo obtained through a woman's oocyte fertilization is transferred to her partner's uterus, regardless of whether an infertility diagnosis has been made. Conselho Federal de Medicina. Resolução CFM n° 2.168/2017. Brasília-DF, 21 de setembro de 2017. [Accessed May 16th 2019]. Available at: http://portalcfmorg.br/images/PDF/apresentacao_reproducao.pdf.

2 Specialist videos report on techniques of fertility preservation that can be used in cases in which a person undergoes medical interventions such as chemotherapy and radiotherapy. Sperm freezing is presented as a resource for men who can, years later, resort to assisted reproduction in order to have children.

3 By complex technologies we refer to all procedures made on women’s uterine endometria, tubes and gametes, embryos, transfer of gametes and uterus, such as vitrification techniques and pre-implantation genetic diagnostics, as well as procedures for fertility preservation and reproductive cell biobanks.

4 ‘Dreams’ is mentioned 271 times in testimonies, closely following the number of mentions of ‘God’ (461) and ‘life’ (359).

5 These 934 corresponded to 818 from 33 clinics in the Southeast region (Minas Gerais, São Paulo and Rio de Janeiro) that had the highest concentration of specialists; 27 corresponded to 6 clinics in the Northeast region; 31 to 9 clinics in the Central-West region; and 58 to 13 clinics from the South.

6 512 from the Southeast region, and the remaining from the South and Northeast.

7 We conducted similar research in Barcelona, examining clinic activities and specialist and patient testimonies (via websites) for the period spanning 2010–2017. This was preceded by post-doctoral research in the year 2010, which included 16 interviews with specialists at the clinics where they were working.

8 Minheirinha is the diminutive form of minheira, a female born in the State of Minas Gerais which is famous for its cuisine and particularly the tasty iconic Brazilian pão de queijo (cheese bread).

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