Corresponding author: Olga G. Isupova ( bolkab@yandex.ru ) © 2020 Olga G. Isupova.
This is an open access article distributed under the terms of the Creative Commons Attribution License (CC BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Citation:
Isupova OG (2020) Delegation of parenthood and language of reproduction: experts and patients on the birth of ART-children. Population and Economics 4(4): 43-56. https://doi.org/10.3897/popecon.4.e57400
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While understanding their positions on various ethical issues in the field of reproductive technologies, IVF patients form their own special language, not scientific, but rather vernacular, based on real experience. A group of women actively seeking procreation with modern biotechnologies remains somewhat conservative, focused on a traditional family. New concepts and terminology are particularly well-formed in their disputes over the use of reproductive donation. In general, what they articulate and advocate is consistent with concepts of bioethics that are also controversial – for some, the priority of genetic connectivity is unusually strong, while others deny its significance. The study bases on examining perceptions of reproductive donation by bioethics specialists presented in the literature and their comparison with the views of ART patients communicating on the Internet. The author uses qualitative discourse analysis and studies thematic discussions on the Probirka.ru website, which are devoted to the preferences of their participants in relation to reproductive donation, its acceptance or rejection. The study shows that patients’ positions are somewhat more extreme than the views of bioethics. For example, some participants practically deny the existence of genes, while others talk about the advantage of finding a child without using one’s own body. The author reveals different groups of patients, and more traditionally oriented women prefer to delegate the genetic part of parenthood to third parties and cannot refuse to bear pregnancy as they see it as a central part of female identity, while more modernized prefer to keep genetic connection if it is possible to refuse childbearing.
Assisted reproduction, gamete donation, bioethics, patient research, delegation of parental rights and duties
Assisted reproductive technologies (ART) have for the first time in human history provided the opportunity for third parties, such as sperm and egg donors and surrogate mothers, to participate in the childbirth. This paper focuses on the construction of a special language and discursive practices by participants of the discussion on problems related to procreation with the help of ART, on the new terminology, new norms and values in parenthood. Particular attention is paid to the inclusion of ART patients in this discussion, and to the formation of their own language of understanding specific aspects of their possible parenthood, including their own vocabulary of terms and concepts about the donation of sex cells and embryos, genetic connection and gestation, just as it happens among specialists in this field.
Introduction of the paper briefly describes the field of ethical discussions on ART and names the key actors affecting and forming positions in this field. Then, in the theoretical part, the author revises the ethical discussions on the different aspects of ART, potentially changing human perceptions of parenthood, focusing on birth involving third parties, i.e. surrogacy and reproductive donation. After that, the empirical part of the study presents discourse analysis of discussions on the thematic Internet forum of IVF patients. In conclusion, the author points to the limitations of the study, puts it in the context of discussions of ethics professionals and, when possible, draws conclusions about the changes observed in the norms in the field of parenthood delegation and the creation of the corresponding language.
Representatives of different areas of knowledge and practice employed in the field of reproductive technology often present their patients as people who allow themselves too strong reproductive desires, which are “not in the interests of humanity as a whole”. For some areas of psychology, any excessively strong desire or reluctance is pathological, i.e. it lies out of the “norm”, and both a complete absence of the desire for procreation and an aspiration to give birth to a child, regardless of any obstacles, fall in this category (see, e.g. about childfree intentions – Halfina et al. 2018; about the infertile and their children – Keshishian et al, 2014;
This applies primarily to representatives of religious confessions, whose attitude to artificial fertilization in general is rather negative. Members of Christian denominations believe that it is better not to go against the will of God, and among them infertility is associated with divine predestination, it is a test to come to terms with (this point of view is primarily held by Catholics, and more recently the Orthodox church too, while Protestants problematize only donation and surrogacy as “crushing” parenthood and the ancestral identity of man). Fertilization outside the body is sinful, because God does not provide for such action (see, e.g., the Message of the Pope (
Academic humanities look at reproductive technologies primarily in terms of the concept of biopolitics and bio-power (terms introduced by Foucault (
Over 40 years of fairly successful existence of ART, there have occurred some bioethical panics regarding their unforeseen and uncontrolled consequences, such as possible decrease of the «quality” of the human population, an increase in the number of malformations in newborns, or acceleration of technogenic inhuman future, etc.
The discourse of reproductive rights has recently turned out to be largely related to the right to “have no children” and to implement the birth control through abortion and contraception. At the same time, the right to have children receives quite strong support from governments that are concerned with the population ageing and aim at increasing population size by any available means. However, the governments want to spend money effectively, so there is more support for the birth of (more) children by reproductively healthy people. This support is usually provided in the form of direct payments and subsidizing assistance to families as part of family policy measures for all or only for poor families, and the funding for infertility assistance recedes into the background because it gives less “return” in the form of the number of born children. Many members of the public are protesting against methods of assisted reproduction “replacing” the natural processes of conception and childbearing, which governments are forced to fund because of the massive changes in the reproductive behaviour of the population (i.e. increase in the age of mothers at birth).
Many developed countries have included ART in free health insurance, although WHO never formulated an unequivocally positive assessment of these technologies (WHO 1990). Expansion of free access is the result of the actions of patient associations, influence of the governments, clinics and pharmaceutical companies. At the same time the interests of all these actors are different and sometimes, they even contradict each other (for example, patients are interested in gaining free access to procedures needed for the most complex health conditions, while governments limit the list of treated diagnoses and impose age barriers, and for clinics and pharmaceutical companies it is important to increase the number of attempts, no matter who pays for them).
The demographic approach to ART is somewhat more balanced, but so far the industry is not recognized as “demographically significant” in terms of its results – even in the most “favourable” countries, i.e. countries socially and financially supporting ART, the proportion of births occurred with the help of ART in total number of births does not exceed 5-7% (Sobotka 2008). This position does not take into account the great significance the birth of children has in infertile families in terms of marital and parental relations, as well as in terms of personal psychological well-being of the involved people.
Sociology of reproduction, that has formed as a scientific branch around 2000, sees reproductive technologies most positively, since it considers them from the perspective of the needs of infertile women (and men), and conducts research on new relationships of kinship (this approach intertwines with anthropology). Among the founders of this research direction we should name Ann Saetnan and co-authors (
Another interesting point of view comes from the perspective of commodification, which is typical for economic sociology (
Experts in medical ethics are increasingly emphasizing that reproductive technologies have become part of everyday life of humanity, and it is useless to question the justification of their existence (
According to Kjell Asplund (
Public perception of women of late reproductive and post-productive age giving children a life through ART remains largely negative, and there is still a debate on setting the upper age for childbirth, somewhere at 40-50 years old (
The same considerations of fairness, reproductive autonomy, non-discrimination and child well-being are applied in addressing issues of ART for single women and homosexual couples. Studies show that children brought up by single women and in homosexual couples are not, on average, different from children growing up in two-parent heterosexual families (
One reason for wanting to have their own biological children is the desire (of many) people for immortality (
As for PGD, most authors consider it unambiguously justified in case of severe genetic diseases in the embryo, but it leads to complex ethical choices with less severe, life-compatible, fetal genetics. It could also be considered discrimination, not to mention the use of PGD to select gender, which is prohibited in most countries. There is also a risk of selection by other traits, such as intelligence or appearance, which could in the future turn the child into a commodity to satisfy the interests of parents. However, the genes of most of these traits have not been clearly determined yet. Despite the obvious humanitarian component, the case when a child is born specifically to become a stem cell donor for a sick sibling, is also ambiguous.
Aspects of the sharing programme, when a woman undergoing IVF gives “extra” eggs to other patients or to clinic in exchange for discounts might be seen as commodification of the body and reproduction.
Particularly many ethical contradictions arise in the field of surrogacy. For some people “natural” surrogacy, which is allowed in the US and banned in Russia, is ethically more problematic. The main argument in this discussion is the fact that in this case a woman is “selling” her own genetical child. For others, on the contrary, full surrogacy is unacceptable, since it is mandatory to use IVF and hormonal stimulation, which is “unnatural”. At the same time, this child will have a genetic connection with the people who are to raise him (although not necessarily, since donor gametes can also be used in this case). The issues raised in the debate on this topic relate to the autonomy of reproductive choice and exploitation of women, human dignity, medical risks, and long-term interests of all involved parties. Issues of commercialization and inequality also arise in the context of conventional IVF, which is not affordable for everyone. Here, there is an “exploitation of the need and hope” of patients, which is part of the general medicalization of society and commercialization of medicine and perception of the human body. Another discussion point is public financing of ART and the choice of those who should be reimbursed for treatment. This debate is based on three following principles:
In this paper, the author pays special attention to ethical issues in the field of gametes donation as an integral part of parenthood, and to the formation of ethical positions in this area, both by experts and ART patients. In practice, according to various data, egg donation is used 5-9 times more often than surrogacy, since it is more attractive to patients for a number of reasons (
The existence of gametes and embryos donation is related to the following ethical issues: what is the basis for parental rights and obligations; what are the parental rights and responsibilities, and whether it is possible for them to be transformed or delegated; whether it is necessary to put a limit on the number of children born to a single donor, what the limit should be and why; whether the donor-born children have the right to know their genetic parents, can anonymity of donors be allowed; what decisions in choosing a donor are future parents eligible to make.
If the transfer of parental responsibility is possible and easy to carry out, then, from a pragmatic point of view, it is not very important whether the gametes donors and surrogate mothers should be considered among future parents of the children. The reasoning in favor of this position is based on the view that people who became parents as a result of an “accident” (e.g., contraception did not work) are given all parental responsibilities and rights (
Many authors emphasize that parental functions are easily transferable to other people (
Arguments for limiting the number of babies born to the same donor are linked to the increased risk of incestuous sexual relationships in the future, complex kinship relationships and general social discomfort due to too numerous offspring (
Disputes regarding the anonymity of donation relate to the absence of heritable medical information, the rights of individuals to know their roots and possible negative psychological influence on them because of the lack of such information (
There is also an argument about “skeletons in the closet” disrupting family solidarity in a case where a child is unaware of their ancestry from the donor, which can be a source of tension for social parents and the child as well (
The next ethically important issue concerns the volume of information about the gametes’ donor disclosed to the recipient. Obviously, a complete lack of information in this case is impossible, but is also impossible to disclose all the details. Usually, the information is similar to that given at dating sites, namely: eye and hair color, education, ethnicity, type of work, hobbies, and religious views. The choice of the donor is driven by avoidance of individuals with infectious and heritable diseases, preference for “similar” and preference for “the best”, i.e., for those whose characteristics to a maximum extent coincide with parental ones, or those who possess traits that are more valuable in the eyes of society – “beauty” and “intelligence”. In the case of similarity, it is easier to conceal the fact that there is no genetic connection between parents and the child from society and even from oneself. In addition, it might seem that the child will better fit into the family. In the case of choosing the “best” there is an expectation that the child will be more successful and more likely to become an “achievement” of the parents (
The empirical data used in this study are the materials of online discussions of regular visitors to the Probirka.ru website (Russian word translated as “test tube”) dating back to 2006-2010, when the website was owned by the patients themselves (it is currently the property of Moscow company “Sweetchild”, engaged in the selection of surrogate mothers and donors). For almost 6 years (April 2003 to January 2009) the website Probirka.ru was an independent association of IVF patients, whose main objectives were information exchange and emotional support. The website was created by patients and for patients. The number of registered users at the end of this period mounted up to 7,000-10,000. The vast majority of them were women who, in the past or present, faced infertility problems and were trying to solve them. To process the materials the author of the study uses discourse analysis method.
To solve the tasks set in the study the author chose discussions related to various normative and ethical aspects of reproductive donation. They came from the topics titled Childfree, Childfree’s Principle of Life, Adoption is the solution to the problem of infertility, Child for the sake of a husband, Who are we: childless or infertile, What do you understand by infertility?, About yourself and your thoughts about IVF, Donor Eggs or Surrogate Mother, and “Ovarian Party” vs “Uterus Party”, which took place during period of time from 01.12.2005 to 25.10.2009. The discussions are currently unavailable on the website, but archived versions are at the author’s disposal and can be provided by request. The time range covers the period when the website belonged to the patients themselves, and therefore served as a platform for free discussion (now the discussions are being moderated by the owners in a direction more appropriate to their interests). Units of analysis (statements) were selected through the search for contrasts, contradictions, expression of the most different positions, sometimes becoming a source of conflicts, and discussions of negative cases (behaviour or relationship with which the “speaker” disagrees, and possible discussion of the reasons for such disagreement). The author did not compare statements with similar discussions on other platforms, because, unlike the topic of surrogacy, more “visible” to others, reproductive donation (especially of eggs) is hardly discussed, perhaps due to the fact that it is little known to the general public or appears to be less significant to the society.
The research was carried out by discourse analysis of open data on the Internet; the quotes are anonymized. The author sees no need to obtain the consent of the participants to use the texts of their statements on the Internet, since there is no danger of disclosure of personal information (we know nothing about the authors and can’t match them with real people). According to the advice of ethics boards, there is no need to obtain consent to use text in the public domain (similar to a situation in a “public park” where everyone is free to observe (
The language of discussion was also the subject of research, and it was studied from the point of view of meanings and values formation in the development of new medical influences – as in the valuation studies approach, which involves the evaluation of new practices, created by actors in the process of a collective act of production of social order, which is desirable in this context (
What is more important about motherhood – genetic bonding or bodily experience? Reflection of expert bioethical discussions can be found in the disputes of patients on the forum. It is extremely rare in reality for a woman to have a choice between the use of a donor egg and the services of a surrogate mother, since it depends on the diagnosis, on the cause of infertility. However, while discussing the reproductive technologies, women somehow reflect on the different possibilities that exist in this new medical field.
The existence of reproductive technologies has brought humankind as a whole and infertile people in particular face to face with the question of what motherhood is first and foremost – the process of bearing a child or a genetic relation? What is easier and generally more acceptable in terms of identity and personal ethical boundaries, to delegate to a third party the “work” of the uterus or “product of activity” of the ovaries? On the contrary, what part of this process should be kept to oneself? Is it possible to delegate everything?
The position of patients in this regard varies greatly but is very consistent within groups. One group some insists that the genetic relationship is of great importance (Wellman 2008):
“What difference does it make why I want a genetically native child? Call it whatever you want: self-fulfillment, female instinct, selfishness or foolishness. I don’t care. That’s what I want. Yes, I want to see my eyes, nose or lips in my child. The kindness and love I showed as a child. My vile temper in the teens. My tightness in my youth and impressionability at a more mature age. I want to see in the child the smart mind of my husband, and even his nasty sharp language.”
“Only someone who understands the little human from the inside can help him best... I instinctively feel that this will happen more often with a genetically native [child]...”
Others argue that a specific female connection with a child is based on pregnancy (which, with no personal experience, is imagined speculatively, being influenced by positive media imprints), so this stage cannot be avoided if there is a need for “real” motherhood, while the genes might be (as proponents of exaggerating the meaning of genetic connection, for example, (
“I have infertility associated with the inability to bear and give birth.”
“To be with your child from the beginning to the end, feel his pushes, to experience all the difficulties and pleasures of pregnancy together with the husband... I am sure that the connection with the child after that will only be stronger, even if he is from a donor egg.”
The development of a common position in patients seems to be impossible. There is no consensus on what part of biological parenthood can legitimately be delegated. Those who insist on the importance of pregnancy generally dominate in number, and even those who talk about the importance of their genes often plan to mimic pregnancy when the child is born by the surrogate mother, since they are afraid to show society that their children have been brought to life through methods that are often condemned. Those who care about genes are outnumbered, but they articulate their position more vividly. However, it seems that now it is easier to delegate, or donate genes (gametes), and pregnancy is broadly seen as the basis of motherhood (although we should note that the majority of the website users might be seen as traditionalists in family matters – the majority of users are married women or women engaged in strong relationships, who stick to “family values”, and often display a negative attitude to homosexual parenthood; as a result, the latter do not discuss issues of ART here). The metaphors used in discussions of delegation of parenthood come from historically known (and therefore also seemingly traditional) forms of division of parenthood with third parties (a nanny, nurse, surrogate mother). But here, egg donation has an advantage – much of the history of mankind nothing was known about genes, only about sperm and the uterus. Some thinkers – for example, Aristotle in some of his works (
Patients of IVF clinics, conceptualizing their positions on various ethical issues in the field of application of reproductive technologies, shape their special values, terminology, and language. It is based on real-life experiences and enables finding words to define concepts and actions in this area committed by this group of people.
The limitations of the study are related to the nature of the sample under review, which consists of ART patients communicating in their specialized forum under conditions of quasi-anonymity in 2005-2009; things could have changed since then. However, the process of rule-setting and the creation of new terminology corresponding to the new norms is not so fast, and little has changed in the field of reproductive technologies from the perspective of medical manipulation involving third parties. So, on the one hand, opinions of patients continue to be subjective in their own way, because they experience new technologies of procreation in their personal biographies, and on the other hand, revolutionary changes that would require the creation of new norms and, accordingly, new terms, have not yet appeared.
The group of ART patients communicating on the Probirka.ru website in some aspects remains very traditional, most of the participants are adherents of a traditional family, consisting of a wife and husband with their children. Their desire for childbirth, or procreation, makes them quite procreative about language formation as well. New concepts, including ethical ones, are especially well formed in their disputes among themselves regarding the application of reproductive donation and surrogacy as parts of parenthood that can now be delegated to third parties. In general, what they formulate and protect is consistent with the concepts of bioethicists, who also argue on the significance of genetic linkage (
The work was supported by the grant of RFBR №20-011-00609 “Procreation: Fundamental and Applied Aspects of Sociocultural Norms – Language of Interdisciplinary Discourse”.
Olga Isupova, PhD in Sociology, Associate Professor at the Department of Demography, National Research University Higher School of Economics. E-mail: oisupova@hse.ru