Beneath the rhetoric: the role of rights in the practice of non-anonymous gamete donation

The use of rights based arguments to justify claims that donor offspring should have access to information identifying their gamete donor has become increasingly widespread. In this paper, I do not intend to revisit the debate about the validity of such rights. Rather, the purpose is to examine the way that such alleged rights have been implemented by those legislatures that have allowed access to identifying information. I will argue that serious inconsistencies exist between the claim that donor offspring have a right to know the identity of their gamete donor and the way such a right is currently met in practice. I hope to show that in systems where non-anonymous donation is practised, an understanding of the proclaimed right of donor offspring to know their genetic identity is one composed of two different rights – the right to know the circumstances of their conception and the right to information identifying the gamete donor – can provide important insights into this important area of public policy.     

Narrative Identity in Third Party Reproduction: Normative Aspects and Ethical Challenges

In the last few decades, assisted reproduction has introduced new challenges to the way people conceive and build their families. While the numbers of donor-conceived (DC) individuals have increased worldwide, there are still many controversies concerning access to donor information. Is there a fundamental moral right to know one’s genetic background? What does identity in DC families mean? Is there any relationship between identity formation and disclosure of genetic origins? These questions are addressed by analysing core regulatory discourse (ethical recommendations and codes of practice). This analysis shows that the notion of narrative identity is suitable for defining and answering these questions. This review analyses the meaning of resemblance in DC families and the way donors are selected following affinity-ties and discusses disclosure strategies and agreements. As a preliminary conclusion, it could be said that, in the field of third-party reproduction, knowing about the donor conception significantly contributes towards the development of a narrative identity and also serves as a moral basis for the child’s right to know.     

Is there a right to access innovative surgery?

Demands for access to experimental therapies are frequently framed in the language of rights. This article examines the justifiability of such demands in the specific context of surgical innovations, these being promising but non‐validated and potentially risky departures from standard surgical practices. I argue that there is a right to access innovative surgery, drawing analogies with other generally accepted rights in medicine, such as the right not to be forcibly treated, to buy contraceptives, and to choose to have an abortion, including a post‐viability abortion where the mother's life or health is threatened by the pregnancy. I argue that we accept these rights because we believe that people are entitled to try to preserve their lives and health and to make choices of an important and intensely personal kind, and I suggest that a person's choice of medical treatment should be seen in the same light. However, since few rights are absolute, I also consider the circumstances in which it may be justifiable to limit the right to access innovative surgery. In discussing this question, I apply the human rights standard of proportionality, comparing the importance of the reasons for limiting the right with the severity of the invasion on liberty.     

Le principe de l’anonymat du donneur de gamètes à l’épreuve de son contexte. Analyse des conceptions juridiques de l’identité

This study clarifies the lively debate surrounding the anonymity of gamete donors. This principle, which has not been challenged since 1994, is currently criticized by a number of people, who were conceived through medically assisted procreation technologies with donor and who now have reached adulthood. Their testimony has a very significant impact on French public opinion. Several official reports have already suggested that the anonymity of gamete donors may well be removed under certain circumstances. To understand why public opinion has evolved so dramatically, we must revisit the legal position of gamete donors in the specific context of less visible changes in the law. Indeed, the legal concepts of parenthood and identity have been reshuffled over time, and such changes have deeply affected the legal issues relating to the anonymity of gamete donors. Formerly, the law governing the identification of individuals was shaped by political and social objectives. Now it is more concerned with the sense of identity and personal fulfilment of people. This change, based on modern western notions of egalitarianism and individuality, has dramatically affected the outcome of parenthood trials. Moreover, biological tests have made the truth available like never before. The possibility of finding out the truth has shocked the practice of many areas of family law and has created a new set of challenges, especially when the secrecy of the genetic parents has been legally established. In France, women have traditionally been able to deliver their children anonymously. A deadlock has resulted, which may now be overcome by introducing a new concept of personal origins. Now the law is evolving to permit the children to demand their biological mothers’ identity under certain circumstances, but without affecting anyone’s rights. The concept of personal origins has been quite successful on the European scene and has also charged the debate. It is now recognized under French and European laws that individuals must have privileged access to their personal origins. Can the principle of anonymity of gamete donors remain immune from such a (r)evolution ?     

To know or not to know? Genetic ignorance, autonomy and paternalism

This paper examines some arguments which deny the existence of an individual right to remain ignorant about genetic information relating to oneself--often referred to as 'a right to genetic ignorance' or, more generically, as 'a right not to know'. Such arguments fall broadly into two categories: 1) those which accept that individuals have a right to remain ignorant in self-regarding matters, but deny that this right can be extended to genetic ignorance, since such ignorance may be harmful to others, particularly those to whom one is genetically related (the 'harm to others objection') and 2) those which contend that, even if genetic ignorance is only self harming, it is not something to which individuals can rationally or morally claim to have a 'right' at all, since they defend their claims on autonomy-respecting grounds and ignorance is inimical to autonomy (the 'incoherence objection'). I argue that defenders of a right not to know have some plausible responses to the 'harm to others objection', they and their opponents reach an impasse in which both sides are left voicing concerns about the paternalistic implications of the other's point of view. I conclude that defenders of a right not to know would, therefore, advance their position further by analysing it in terms of values other than those of autonomy and rights.     

A "Consumer's Right" to Choose a Midwife: Shifting Meanings for Reproductive Rights under Neoliberalism

The "right to choose" has long served as the ideological rallying cry for reproductive rights activists. Yet critical attention to the social, political, and economic conditions under which individuals make such choices has been central to anthropological research on reproduction. In the context of neoliberal public policy shifts that favor trust in the market to remedy all social and economic inequality, I explore how women's reproductive rights are becoming characterized by one's ability to consume uneven reproductive "choices." Based on my ethnographic fieldwork with midwifery supporters in Virginia, I examine how organizers have begun to utilize "consumer rights" rhetoric in their struggle for legal access to midwives. One often-unintended result has been intensified divisions within this movement, particularly as low-income "homebirthers" feel unable to claim the identity of "consumer." I use Virginia as a case study to raise broader questions about women's shifting strategies toward securing reproductive rights under neoliberalism.     

En France, la majorité des donneurs de spermatozoïdes souhaite le maintien de leur anonymat

So far in France, sperm donor anonymity, which was a fundamental principle and has been twice confirmed in the law in 1994 and 2004, is debated nowadays. In this context, the Cecos wanted to know the donors opinion on anonymity. In 2006, 193 semen donors recruited in 14 Cecos answered anonymously a questionnaire: 73% were in agreement with the principle of anonymity and less than 30% agreed that the future law should change to allow the children to know the donor identity. In case of anonymity disclosure, 60% would give up their sperm donation. The same proportion of donors would accept that non identifying information on them could be given on request to the parents and the child.     

Le don de sperme en Belgique: entre loi et pratique

As well as the other assisted reproductive technologies, insemination with donor sperm has received an abundant legislative framework in Belgium providing the context in which this activity is allowed. According to a law of 2007, we know an access to donor sperm is also open for lesbian and single women. Even if they have to be declined in the multiple points of view of the Belgian society, the National Advisory Ethical Committee proposed in 2004 recommendations for the use of donor sperm. Based on an unusual consensus, it appears that anonymity of the sperm donor must be preserved as long as possible, even if some think that an access to non identifying information (concerning position, philosophy, etc.) should remain accessible if the donor agrees and if it is requested by the patients, mainly if they are lesbian or single.     

Owning Genetic Information and Gene Enhancement Techniques: Why Privacy and Property Rights May Undermine Social Control of the Human Genome

In this article I argue that the proper subjects of intangible property claims include medical records, genetic profiles, and gene enhancement techniques. Coupled with a right to privacy these intangible property rights allow individuals a zone of control that will, in most cases, justifiably exclude governmental or societal invasions into private domains. I argue that the threshold for overriding privacy rights and intangible property rights is higher, in relation to genetic enhancement techniques and sensitive personal information, than is commonly suggested. Once the bar is raised, so-to-speak, the burden of overriding it is formidable. Thus many policy decisions that have been recently proposed or enacted – citywide audio and video surveillance, law enforcement DNA sweeps, genetic profiling, national bans on genetic testing and enhancement of humans, to name a few – will have to be backed by very strong arguments.     

The child's best interest in gamete donation

Procreation with donor gametes is widespread and commonly accepted, but it involves ethical questions about the child's best interest. Understanding the historical structures of the moral discussion of gamete donation may contribute to reflecting on the child's best interest. This is why I have analysed the debate on gamete donation in the Netherlands, and this analysis has uncovered some striking discontinuities. Notions of the child's best interest have undergone a radical swing. In the past, it was considered acceptable to conceal the truth about the child's biological origin, but in the past two decades the general opinion has changed to the common belief that this information should be shared with the child. This changed notion of the child's best interest will be analysed using a framework encompassing three views of the child, which derive from the debate on children's rights. These three views each provide a different interpretation of the child's moral and political status. I conclude that the changed notion of the child's best interest results from a view of the child that focuses on autonomy and citizenship, and which frames the child's interests according to its legal status. I comment on this view and I champion an alternative one, namely ‘the embedded child’. This is a relational view based on care ethics that goes beyond what can be articulated in law, and that will help to establish a more balanced interpretation of the child's best interest at the practice and policy levels of gamete donation.     

Conceptualising a Child-Centric Paradigm

Since its inception, donor conception practices have been a reproductive choice for the infertile. Past and current practices have the potential to cause significant and lifelong harm to the offspring through loss of kinship, heritage, identity, and family health history, and possibly through introducing physical problems. Legislation and regulation in Australia that specifies that the welfare of the child born as a consequence of donor conception is paramount may therefore be in conflict with the outcomes. Altering the paradigm to a child-centric model, however, impinges on reproductive choice and rights of adults involved in the process. With some lobby groups pushing for increased reproductive choice while others emphasise offspring rights there is a dichotomy of interests that society and legislators need to address. Concepts pertaining to a shift toward a child-centric paradigm are discussed.     

Gametes as embodied capital: perceptions on self-pricing reproductive biocommodities

The exchange of gametes has polarized and captivated the attention of biomedical practitioners, policy stakeholders, ethicists, and the general public alike. Studies have thoroughly explored the unique histories of this industry, its economies, legal statutes that influence clinical practice, motivating factors of donors, as well as debates on differentiating donor, offspring, and family rights from each other. This mixed-method study refocuses the analytical lens to examine the perceptions and decision-making processes of individual willingness to participate in gamete exchange networks in the United States for procreative or research purposes. Analyses revealed that individuals engage in a form of self-biocommodification, where ascribed values of gametes are explained as embodied capital and rationalized by Western biomedical explanatory models of genetics and reproduction. This work contributes to social scientific explanations of biocommodification while providing new points of departure in reconceptualizing science and technology studies through the perspectives of potential actors in gamete exchange networks.     

Research participation and the right to withdraw

Most ethics committees which review research protocols insist that potential research participants reserve unconditional or absolute 'right' of withdrawal at any time and without giving any reason. In this paper, I examine what consent means for research participation and a sense of commitment in relation to this right to withdraw. I suggest that, once consent has been given (and here I am excluding incompetent minors and adults), participants should not necessarily have unconditional or absolute rights to withdraw. This does not imply that there should be a complete absence of rights, or, indeed, an abandonment of the right to withdraw. The point of this paper is to show that the supposed unconditional or absolute nature of these rights may be self-defeating and so fail to respect the autonomy of participants. In addition, and on a more positive note, I suggest that, attaching certain conditions on the right to withdraw, may better respect the autonomy of these participants by underlining the idea that autonomy is more than mere whim or indifference to the fate of others. On the contrary, research staff are currently unable to 'push' participants, who may merely have logistical difficulties unrelated to the research itself, but who really want to stay the course, for fear of coercing them. Furthermore, researchers now try to 'screen out' people they think may be unreliable to protect the science of the study and so groups at risk of dropping out may be unfairly denied access to research treatments. I conclude that on-going negotiation between the relevant parties could be on balance the only truly acceptable way forward but concede certain important limitations to take into account.     

Indirect parental effects on offspring viability by egg-derived fluids in an external fertilizer

The capacity for parents to influence offspring phenotypes via nongenetic inheritance is currently a major area of focus in evolutionary biology. Intriguing recent evidence suggests that sexual interactions among males and females, both before and during mating, are important mediators of such effects. Sexual interactions typically extend beyond gamete release, involving both sperm and eggs, and their associated fluids. However, the potential for gamete-level interactions to induce nongenetic parental effects remains under-investigated. Here, we test for such effects using an emerging model system for studying gamete interactions, the external fertilizer Mytilus galloprovincialis. We employed a split-ejaculate design to test whether exposing sperm to egg-derived chemicals (ECs) from a female would affect fertilization rate and offspring viability when those sperm were used to fertilize a different female''s eggs. We found separate, significant effects of ECs from non-fertilizing females on both fertilization rate and offspring viability. The offspring viability effect indicates that EC-driven interactions can have nongenetic implications for offspring fitness independent of the genotypes inherited by those offspring. These findings provide a rare test of indirect parental effects driven exclusively by gamete-level interactions, and to our knowledge the first evidence that such effects occur via the gametic fluids of females.     

Perception and Conception: Shaping Human Minds

Perceptual experiences provide an important source of information about the world. It is clear that having the capacity of undergoing such experiences yields an evolutionary advantage. But why should humans have developed not only the ability of simply seeing, but also of seeing that something is thus and so? In this paper, I explore the significance of distinguishing perception from conception for the development of the kind of minds that creatures such as humans typically have. As will become clear, it is crucial to pay careful attention to the different kinds of information that are involved in perceiving and conceiving (including the way such information is gathered and transmitted). By identifying such kinds of information and the role they play, we can then understand an important feature of why creatures like us have the kind of consciousness and mental processes we do.     

L’entretien psychologique systématique pour les couples optant pour l’IAD: huit ans d’expérience clinique dans une législation prévoyant la levée de l’anonymat du donneur

A law on medically assisted procreation was implemented in Switzerland in 2001. This law is subordinate to the well-being of the child and stipulates that only married couples can benefit from donor insemination (DI). Furthermore, a child who was conceived with donor sperm may obtain access to information including the identity of the donor on reaching adulthood, at age 18. The law also specifies that psychological assistance must be offered before, during, and after treatment. For the past 12 years, the Unit of Reproductive Medicine and the Center of Medically Assisted Procreation in Lausanne employ a concept of psychological assistance adjusted to each couple’s needs, called “ressource counselling”. In preparation for DI, specific questions are examined, such as “Should the child be informed about the donor insemination, should others be informed, if so, how and when?” These questions may also be discussed in a group setting specific for couples concerned with DI. Our experience shows that systematic counselling helps couples in finding their own path through the delicate subjects of secrecy, attachment, and the rights of a child to be informed of his/her genetic links.     

Hidden Histories of Indigeneity in Urban Andean Ecuador: Transubstantiation,Ceremony, and Intention in Quito

Students of the South American Andes have long noted the extraordinary force of objects to traverse cosmic and psychic distances, fill (or empty) the living with power that is often exhibited through public dance, and serve as ‘transactors’ in senses socioeconomic, psychic, cosmic, and geographical. In this article, I examine substances and actions involved in a modified version of Holy Communion that took place in June of 2012 in a working-class neighbourhood located at the outskirts of Quito, Ecuador, to celebrate the nativity of St. John the Baptist. I argue that this act was specifically designed to expand the celebration of the Eucharist in a way that allowed a type of transubstantiation whereby the relatives and friends of former hacienda peons were able to transform their physical bodies into something some believed had long been hidden from them – their right to live in the city as persons of their own making, ones who could legitimately adopt the identity and corresponding histories, territories, and political rights of indigenous persons.     

Frozen embryos, genetic information and reproductive rights

Recent ethical and legal challenges have arisen concerning the rights of individuals over their IVF embryos, leading to questions about how, when the wishes of parents regarding their embryos conflict, such situations ought to be resolved. A notion commonly invoked in relation to frozen embryo disputes is that of reproductive rights: a right to have (or not to have) children. This has sometimes been interpreted to mean a right to have, or not to have, one's own genetic children. But can such rights legitimately be asserted to give rise to claims over embryos? We examine the question of property in genetic material as applied to gametes and embryos, and whether rights over genetic information extend to grant control over IVF embryos. In particular we consider the purported right not to have one's own genetically related children from a property‐based perspective. We argue that even if we concede that such (property) rights do exist, those rights become limited in scope and application upon engaging in reproduction. We want to show that once an IVF embryo is created for the purpose of reproduction, any right not to have genetically‐related children that may be based in property rights over genetic information is ceded. There is thus no right to prevent one's IVF embryos from being brought to birth on the basis of a right to avoid having one's own genetic children. Although there may be reproductive rights over gametes and embryos, these are not grounded in genetic information.     

The problem of abortion: essentially contested concepts and moral autonomy

When one thinks about the ethics of abortion, one inevitably thinks about rights, since it is in terms of the concept of rights that much of the debate has been conducted. This is true of overtly feminist as well as non-feminist accounts. Indeed, some early feminist writers--Judith Jarvis Thomson and Mary Ann Warren, for example--employ a model of rights that is indistinguishable, or virtually indistinguishable, from that of their non-feminist counterparts. However, more recent feminist writers have developed a different understanding of 'a woman's right to choose.' In this paper, I will begin by outlining the non-feminist debate over the moral permissibility of abortion. I will suggest that this debate is irresolvable, since at its heart is an 'essentially contested concept', that of personhood. I will then consider the way in which some feminist writers have attempted to reconceive the terms of the abortion debate and suggest an expanded account of women's right to abortion, drawing on the work of Susan Sherwin. Finally, I will argue that there is a further element to a 'woman's right to choose' that expands on and provides a conceptual link between feminist and non-feminist understanding of abortion.     

In the matter of Stephen Dawson: right v. duty of health care.

In cases like that of Stephen Dawson the ethics of proxy decision-making are at stake. As long as patients are persons they have rights, the incompetent ones no less than those who are competent. The only difference is that in the case of incompetent persons the rights must be exercised by proxy. The import of the Stephen Dawson case is that by this precedent Canadian law now radically alters the status of incompetent minors in such a way that their rights are curtailed in two fundamental ways. First, the parameter of qualitative considerations that is available to any other person is removed from the armory of the decision-making criteria of incompetent minors and can no longer be employed by the proxy decision-makers. Second, what are rights in the case of competent individuals--the right to life and the right to health care--become duties. Ethically this dénouement is deplorable. The medical profession now not only faces the pragmatically unenviable task of having to save or sustain all incompetent minors so long as medical science will permit but will have to do so even at the cost of quality of life. I shall pass over in silence the ethics of the resource-allocation problem that now arises. As a medical ethicist I can only hope that the medical profession will soon see fit to challenge this decision on a formal basis.