第二部 生殖技術論文 KinTra -A Danish research project When babies, bodies and bioethics are on the move
2-1 KinTra -A Danish research project
When babies, bodies and bioethics are on the move
Reproductive medicine and reproductive assistance have entered a global marketplace. The ability to cryopreserve or put reproductive cells “on ice” along with a growing transnational market in reproductive assistance produce new commercial opportunities: Danish women travel to Spain for donated oocytes; frozen gametes are shipped from clinics in the Ukraine to clinics in Ireland; Japanese women travel to Thailand for surrogacy; women choose to secure their fertility through freezing their eggs (social freezing); while the European demand for “Northern” phenotypes entice fertility clinics to recruit young blond women to donate their eggs in exchange for cash and a week on the beach. The combination of ice (technology) and mobility along with a global market in gametes, embryos, and hormonal treatments create new opportunities for clinical exchanges while also, igniting legal and ethical debates.
Reproductive migrations parallel the growth in medical tourism more generally (e.g. Roberts & Scheper-Hughes 2011). Similar to medical tourists, reproductive travellers are motivated by differential national laws on access and availability of the reproductive techniques, clinical success rates, procedural costs, and waiting lists that differ markedly from country to country (e.g. Pennings 2004). The research project, presented in this essay, (Trans)Formations of Kinship: Travelling in Search of Relatedness (KinTra), recognizes that reproductive assistance and transnational adoption have entered a global marketplace. Consequently, the project's main research question is: How do we come to understand kinship and the making of families in a time when bodies, biogenetic substances, and clinical expertise cross borders and create new contexts for imagining and making relatedness?
In the following, I will briefly outline the joint research project KinTra funded by the Danish Research Council on the Humanities (2011-2014). I will detail the theoretical and methodological frameworks, and then turn to some of the questions raised by the seminar group. In a more general manner, the KinTra project highlights the importance of doing cultural analyses of reproductive practices while, also, raising a range of critical questions related to the ethics of transnational reproduction. Towards the end of this essay, I turn to two examples of KinTra research: Feminist bioethics on egg donation and legal and bioethical debates on the use of dead men's sperm.
The research project KinTra builds upon scholarship broadly positioned within feminist science and technology studies and sociological, anthropological studies of new reproductive technologies and transnational adoption (e.g. Inhorn 2011, Waldby & Cooper, 2008). Feminist scholarship has already demonstrated how reproduction without sex destabilizes the nuclear family (e.g. Weston, 1991). It re-naturalizes the desire for motherhood (e.g. Markens 2007) while turning biogenetic substances into global commodities. Inspired by this scholarship, we explore how new crossings within reproductive technologies and transnational adoptions not only continue to (trans)form notions of kinship but, also, call upon conventional understandings of relatedness.
Sociological studies of reproductive technologies and adoption are also important in the project. They point to the ways in which the making of kinship has become a do-it-yourself project and a form of reproductive labor (e.g. Waldby & Cooper 2008). Individuals, frequently located in the West, take up a flexible consumer position and imitate the traditional nuclear family while also enterprising-up (for _better and _younger reproductive cells) and going global to fulfill their dreams of parenthood (e.g. Kroløkke 2012a, Inhorn 2011). The consumer position is, however, also critically positioned within a global perspective in which comparatively wealthier women seek the reproductive assistance of poorer women. The global market in reproductive labor is stratified, positioning poorer women in the developing world as the (new) reproductive workers.
Similarly, anthropological studies on new reproductive technologies and transnational adoption draw attention to the values and economic interests associated with the making of relatedness while pinpointing the tensions that frequently arise between social, biological, and genetic forms of belonging (e.g. Thompson 2005). Little knowledge exists, however, of the motivations involved in relocation and fertility travel and not the least in the (trans)formations of kinship these processes involve (e.g. Inhorn 2011).
This interdisciplinary scholarship illuminates and addresses the complex biomedical developments within fertility treatments. Globalization erodes boundaries of time and space, giving rise to tensions between social, biological, legal, ethical, and genetic understandings of parenthood as well as between values and economic interests (e.g. Melhuus 2012, Thompson 2011). In this manner, national boundaries are transgressed; reproduction is commercialized; some bodies become biological resources or “bio-available” (Cohen 2005); and nations find new ways to police who and what reproductive assistance citizens can receive (e.g. Kroløkke 2012b). In KinTra, seven scholars address this ripe area of study, while analytically turning their attention to how language, discourses, and material realities (trans)form kinship and construct as well as are constructed in the daily lives of individuals. Empirically, we turn our attention to a. new media and social networking sites, b. film and art, c. the fertility clinic, and d. to the individuals doing the travelling──adoptees as well as the (in)fertile.
A Note on Methods
In the KinTra project we explore our larger research question through a multi-sited approach (e.g. Marcus 1999) in which we analyze global as well as local movements of donors, clinical practices, and written documents. This leads to a triangulation of methodological frameworks, from interviewing and field observations to an analysis of documents in context (e.g. Hammersley & Atkinson 2006). Interviewing and field observations are well suited for getting in-depth knowledge about experiences and concerns as well as an understanding of the storytelling that takes place in social interactions (whether with donors, clinicians, lawmakers, or ethicists). Documents in context such as legal briefs or clinical webpages add an important piece to the overall understanding of the cultural context, the practices, and communication that takes place amongst key stakeholders including the ways in which certain destinations become constructed as particularly desirable (e.g. Hvidtfeldt Madsen 2012). The subprojects will approach the notion of reproductive medicine and mobility on different levels empirically as well as analytically. Empirically, the subprojects address the stories the individual actors tell, the stories that are produced and communicated by clinics and donors and analytically, in the ways these stories move and travel globally.
Empirically, the KinTra project addresses the stories the individual actors tell, the stories that are produced and communicated by clinics, sperm banks, adoptees, bloggers, film-makers, and on the internet and in the ways stories travel globally. The project views the chosen sites as important in contemporary understandings of the making of kinship. For example, while the clinic is a crucial site for exploring the (trans)formation of kinship; a site where different cultural and moral values, professional expertise, notions of kinship and commercial interests intersect; new media and social networking sites are critical in the staging of the experiences of the reproductive consumer, donor children, and adoptees while also at times influencing the clinic. And analytically, we explore the social meaning of kinship, how these meanings are staged and read in various contexts, how they are changed, and what role they play not only to individuals but also in social and political processes. Jointly, we address how (trans)formations of kinship affect different local communities including clinical and legal practices and how the different global-local crossings of bodies, biological matter, and stories are produced, re-produced, and resisted.
Questions from the audience: Legality, children, and economics
Having briefly introduced the KinTra project, I turn now to questions from the seminar group. The questions from the audience were both interesting and highly relevant. I have broadly divided the questions from the audience into three types of questions: Questions related to legality; questions related to the best interests of children and donor offspring; and questions related to economics and the transnational market in reproduction. I will return to the questions related to ethics after my brief introduction to two examples of KinTra research that both center bioethical concerns.
Firstly, several of the audience members raised questions related to legality centering Danish law (the ability to adopt embryos, the ability to use frozen embryos after the death of the husband, and issues pertaining to what kind of legal system could accommodate any wrongful treatment when treatment in fact takes place in a foreign country). The transnational fertility market is in fact the result of different legal systems. The Danish patients included in our interview projects would prefer to stay in Denmark for treatment, yet they report feeling “forced” to travel elsewhere for treatment. According to Shenfield et al. (2010), a minimum of 24,000-30,000 cycles of cross-border fertility treatments could be taking place each year throughout Europe involving 11,000-14,000 patients. In their analysis of 1230 completed questionnaires from 46 clinics in 6 countries, they point to oocyte and embryo donations as the most likely reasons for travelling to Spain, while sperm donation is the most likely reason for going to Denmark. This considerable flow of patients crossing European national borders produces not only new babies but also, as demonstrated in our project, new ethical and legal concerns related to the rights of patients as well as those of possible future children (Kroløkke 2012b). In fact, counteracting this global flow, Turkey in 2010 made reproductive travel illegal. Travelling outside Turkey to seek reproductive treatment is now considered a criminal act (Head 2010).
Thus, while Danish law does not permit embryo adoption, it is legally possible in Spain. And while it is possible in Denmark to use frozen embryos after the death of the husband, a similar option does not exist in Norway. The question related to jurisdiction, however, is an important one because what happens, for example, if a treatment goes wrong in one country yet the patient lives in another? This is in fact one of the reasons why transnational travelling for treatment is discouraged by the Danish ethical council, as it takes away some of the agency that patients, in the Danish system, may otherwise have. Issues involving legality are critical and key to the transnational market in fertility.
Secondly, the audience raised several questions related to the health and best interests of donor children. For example, is sperm and egg donation anonymous in Denmark and if so, how is anonymity managed in light of the best interests of children? Or do donor children in Denmark have a self-help group in which they can meet other donor children? Similarly, do any studies on ART offspring exist and if so, how might they illustrate a resemblance to, for example, research on children born as second generation immigrants in Scandinavia? These are questions that are proving to gain in importance. In Denmark as well as in other countries in which donor sperm has been used for some time (such as in the United States), ethical issues frequently center on the issue of donor anonymity. Should donor anonymity be possible when it simultaneously erases the child's possibility of ever knowing her or his (in this case) genetic father? In Denmark the current law stipulates that sperm donors can choose to be known (meaning that the donor child at the age of 18 can receive identifying information about the donor) or anonymous (making it impossible for the donor conceived child to ever receive identifying information). It is the intending parent(s), however, that choose whether they will opt for a known or an anonymous donor. Interestingly, sperm and fertility clinics frequently report that heterosexual Danish couples prefer anonymous sperm donation, while single women are more interested in ─and more open to known donations. While little knowledge exists as to why heterosexual couples prefer anonymous donation, it is likely related to the desire to maintain the two-parent nuclear family including one father and one mother─thereby, leaving the sperm donor largely invisible. Although Danish law recently permitted both known as well as anonymous egg donation, anonymous egg donation continues as a preferred choice. This discrepancy between egg and sperm donation may in part be due to the difficulty attracting egg donors in the first place; yet it may, also, be related to the fact that the intending mother carries and gives birth to the baby, thus, her role in the reproductive process is secured in a manner that is distinctly different from sperm donation.
Currently, little research has documented the overall wellbeing of donor-conceived children. In the United States, however, several online sibling registries exist to enable donor-conceived children to register and find half-siblings. New media communications technologies such as Facebook are, also, used by children (now frequently young adults) as well as by women who have chosen anonymous or known sperm donation. This is, also, the case on a Danish Facebook site in which Danish women actively try to find half-siblings to their donor-conceived children.
The relationship between donor-conceived children and second-generation immigrant children is another interesting area of study. Clearly, surrogate children, for example, at times experience difficulty entering the intended parents'country. This was most notably in the Norwegian case of Kari Ann Volden ─ a Norwegian single woman who used surrogacy as well as anonymous egg and sperm donation (Kroløkke 2012b). The Volden twins were born prematurely in Mumbai and were refused Norwegian passports as the Norwegian authorities argued that the babies were Indian and not Norwegian (they had in fact no Norwegian genetic link). Meanwhile, the Norwegian authorities argued that the children were Indian, and thus, the children were stateless for almost one and a half year before they received papers to go to Norway in the foster care of Kari Ann Volden. Access to citizenship as well as larger identity type of questions are relevant to donor-conceived children and may in fact benefit from a close dialogue with research already carried out involving second-generation immigrants as well as adoptees.
Finally, one of the audience members raised a question on economics related to the particularities of assisted reproduction in Denmark. In Denmark you can receive reproductive assistance free of charge up until the woman reaches the age of 40. After the age of 40, the individual woman or the couple must pay for their infertility treatments themselves and after the age of 46, women are no longer legally permitted to receive assisted reproduction. The woman's age is the only determining factor, thus, men much older can still receive assisted reproduction provided that their female partner is younger than 46 years of age.
Two examples of KinTra research
Ethics on Eggs
I now turn to an example of KinTra research; namely, feminist bioethics on egg donation. Feminist bioethicists have challenged understandings of what comes to count as ethical principles in reproduction calling for the development of more contextual approaches (e.g. Shildrick 2008). In this example, I investigate ethical debates on egg donation as they unfold in the Danish ethical council, is negotiated by Spanish egg donors, intending Danish parents, and by the Spanish clinics. Whereas the fertility traveller in clinical discourses and in their own accounts is positioned in light of the rhetoric of reproductive rights; compensation for egg donation is, in the Spanish recruitment material, transformed to an intimate exchange between two like-minded women; meanwhile, positioning the egg donor as a “natural” gift-giver and the recipient as a “rightful” mother. In contrast, Danish bioethical debates situate compensation for egg donation in close proximity with two troublesome configurations: the illegal immigrant and the prostitute. The research concludes that understanding how affects in transnational egg donation circulate and stick to particular bodies problematizes the altruism/compensation divide and opens up for the development of new bioethical principles.
In the research I suggest, however, that feminist bioethics will benefit from avoiding a rigid binary system of reproductive rights and wrongs, and instead, illustrate the interconnections of various embodied subjects, discourses, regulations and in the process critically interrogating the rhetoric of the gift, for example, and raising questions such as: Whose bodies are made available as gifting bodies in the global market in reproduction and what social groups are supposed to have the right to these services? While donor bodies become available based on similarity (immunological similarity) and/or marginality (class, gender, or political marginality), other bodies become legitimate recipient bodies based on age, location, and economic privilege. I, therefore, conclude that feminist bioethics will benefit from decentering questions related to altruism and compensation and raise other questions of a more relational character pertaining, also, to flexibility and fluidity such as: Who gains from this transnational exchange in eggs? Is anyone harmed? What do these practices do? How do egg donors experience and talk about this practice?
Dead Men's Sperm
Separate cases in Denmark and Australia have brought the debate on posthumous sperm to the forefront, seemingly demanding answers to the question: What happens to reproductive cells once the depositor dies and who is to decide? In this project, (forthcoming in Australian Feminist Studies), I jointly with Stine Adrian apply a feminist cultural analytical framework to three select Danish and Australian cases. We argue that legal and bioethical debates frame posthumous reproduction in light of four discursive configurations and we question and trouble the work that these four configurations do to our understanding of posthumous reproduction and the making of families.
Posthumous reproduction is disciplined and managed in both cultural contexts. The fact that the High Courts granted the Danish and one of the Australian women the right to possess sperm after the death of their husbands, positioned sperm as property. In the Australian case, Ms. Edwards successfully positioned herself as the administrator of the late Mark Edwards' estate and it was in this capacity that she sought possession of the now frozen sperm. Meanwhile, the widow in the Danish case was successful because the sperm had been deposited at a sperm bank and not in a medical clinic.
In many ways these cases and the constructions of monstrosity that they imply echo previous debates on assisted reproductive technologies including debates on sperm donation and single and lesbian women's access to IVF (e.g. Liljestrand 1995). Feminist analyses of posthumous reproduction illustrate how the social practices of women who have lost their partner are controlled in order to overcome the blurring of boundaries between nature and culture and in these cases, between life and death. While reproductive technologies and the freezing of reproductive cells open up for new stories of coming into being, these potential postmodern stories do not that take center stage in the debates. Rather, in the cases in which Danish and Australian women achieve the legal rights to possess their dead husbands' sperm, it is the invoking of the nuclear family through the constant reestablishing of intimate relations with the deceased husband and father that unfolds. The patriarchal nuclear family and heterosexed desire for a joint child are instead resurrected. However, not only normative elements are at work. In a more general sense, posthumous reproduction opens up for the continuation of genetic lineage after death and the making of what may come to be known as necro-kinship while simultaneously, also, queering reproduction and extending reproductive desire and agency till after “death us do part.”
Questions from the Audience: The ethics of selection
Several of the audience members raised questions related to what I have chosen to call the ethics of selection. Questions related to the selection of the sperm donor, for example: Who is selected as a sperm donor? What information is provided to potential clients about the sperm donor ? Is the donor's criminal records, if any, included as common information? And finally, how do the recipients select the sperm donor? Can they select sperm donor according to the donor's attributes such as his occupation, family, and academic background? While extended donor profile lists make donor selection more sophisticated presenting the potential client (customer or patient) with a wide range of choices, selection in the clinics is usually made in light of phenotype matching. Consequently, clinicians try to match the donor and the recipient in terms of eye color, hair color, skin color, and height. Several of the Danish interviewees travelling for egg donation, also, privilege educational background, however.
In short, in the KinTra project we employ feminist anthropological, cultural studies, bioethical, and sociological perspectives to understand the ways that babies, bodies, and bioethics today move. While we in the current project have tended to privilege the experiences of the intended mothers, surrogates, and adoptees, we are increasingly now also turning our attention towards the clinical expertise and the donor bodies that move transnationally as well.
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