Under the terms of the UN Convention on the Rights of the Child, which Australia has ratified, children have a right to know who their genetic parents are. As a result, we have a duty to establish these facts and to make this information available for children to access should they wish to know. Introducing mandatory DNA testing of newborns and their alleged genetic parents is one viable option to ensure (...) that this information is available for children to access. Indeed, it may be the only viable option to address childrens' right to the fulfilment of Article 7 of the CRC. There are a number of benefits to obtaining this benefit for children. For one, mandatory DNA testing could solve all disputed paternity cases and finalise them early in the lives of children, thus making life more financially secure for those children in the long term. This could reduce or eliminate the need for fathers to secretly carry out DNA tests in order to disestablish paternity. The large number of benefits gained from identifying genetic parents for children and the small possible risks that they may suffer when this information is withheld give us good reasons to support mandatory DNA testing. (shrink)

Over the years a number of countries have abolished anonymous gamete donation and shifted toward open-identity policies. Donor-conceived children are said to have a fundamental “right to know” the identity of their donor. In this article, we trace the arguments that underlie this claim and question its implications. We argue that, given the status attributed to the right to know one's gamete donor, it would be discriminatory not to extend this right to naturally conceived (...) children with misattributed paternity. One way to facilitate this would be through routine paternity testing at birth. While this proposal is likely to raise concerns about the conflicting interests and rights of other people involved, we show that similar concerns apply to the context of open-identity gamete donation. Unless one can identify a rational basis for treating the two groups differently, one's stance toward both cases should be the same. (shrink)

Over the years a number of countries have abolished anonymous gamete donation and shifted toward open-identity policies. Donor-conceived children are said to have a fundamental “right to know” the identity of their donor. In this article, we trace the arguments that underlie this claim and question its implications. We argue that, given the status attributed to the right to know one's gamete donor, it would be discriminatory not to extend this right to naturally conceived (...) children with misattributed paternity. One way to facilitate this would be through routine paternity testing at birth. While this proposal is likely to raise concerns about the conflicting interests and rights of other people involved, we show that similar concerns apply to the context of open-identity gamete donation. Unless one can identify a rational basis for treating the two groups differently, one's stance toward both cases should be the same. (shrink)

While in this paper I focus on adoptees, my argument is applicable to donor-conceived children and children of misattributed paternity. I address some of the noted risks of closed adopted and the benefits of open adoption, which is more in keeping with Article 7 of the United Nations Convention on the Rights of the Child (CRC), which provides all children with a right to know about their genetic parents and which the Australian government (...) ratified in 1980. (shrink)

This paper analyses the complex issues faced by regulators of the infertility treatment industry in response to the social and technological changes that heralded a new openness in knowledge about genetics, paternity and the concomitant need for donor offspring to know their genetic origins. The imperative for full information about their donor and biological father, who contributed to their creation and half of their genome, was an outcome unanticipated by the architects of (...) the donor insemination programme. Genetic paternity testing realised the possibility of fixed and certain knowledge about paternity. This paper outlines medicine's role in the formation of normative families through the use of donor insemination. Extending information from an Australian study on the use of DNA paternity testing, it analyses what the social and scientific changes that have emerged and gained currency in the last several decades mean for the new ‘openness’ and the role of paternity testing in this context. It concludes with recommendations about how to deal with the verification of paternity in linking donor conceived adult children to their donor. (shrink)

BackgroundSome persons conceived with donor gametes react negatively when they found their birth via donor conception. They request access to information about and seek to communicate with the donor. However, some countries mandate donor anonymity. Other countries allow donor-conceived persons to access donor information, but they can only use this access if their parents have disclosed donor conception to them. We investigated a thorny issue of donor conception: whether donor (...) conception should be shifted from an anonymous basis to a non-anonymous basis.MethodsWe review the issues and concerns regarding donor conception. We then consider the impact of direct-to-consumer genetic testing on donor conception, as well as the influence of donor conception on offspring’s identity and the potential of different types of donors. To discuss the future policy of donor conception, the policies on the anonymity of gamete donors were investigated using publicly-available documents in 15 countries.ResultsThe aim of mandating donor anonymity is to protect the privacy of the donor and intended parents. However, the diffusion of direct-to-consumer genetic testing may make it impossible to maintain anonymity. Birth via donor conception shapes the offspring’s identity, and the donor may further influence the development of offspring’s identity through communications. It remains important to disclose donor conception to donor-conceived offspring and to provide them with donor information. However, that information might be insufficient for some donor-conceived persons. Here are benefits to having open-identity donors and known donors. Such donors can make an agreement with the parents regarding future communication with the offspring, although both sides should respect privacy. Subsequent counseling for all parties involved can result in better tripartite communication agreements.ConclusionsIn sum, ethical and practical issues that complicate donor anonymity are driving a shift to non-anonymous donor conception, in which all parties come to a communication agreement. To pave the way for such a donor conception system, transitional measures can be put into place. For countries that already adopted non-anonymous donor conception, ensuring the communication agreements is important to protect the rights of parents, donor, and offspring. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Significant Interests and the Right to KnowReuven Brandt (bio)1. IntroductionDaniel Groll's book Conceiving People (2021) attempts a novel and insightful defence of why individuals ought to choose open over anonymous gamete donation, barring any special circumstances. In broad strokes, the overall argument proceeds by defending three main claims: (1) that failing to disclose to children that they are donor-conceived is morally problematic, (2) that children who are informed (...) that they are donor-conceived (either intentionally by their social parents or otherwise) are likely to have a worthwhile, significant, subjective interest1 in having knowledge about their gamete donor(s), and (3) that parents have a duty to advance their children's worthwhile subjective significant interests. Groll's account departs from other criticisms of anonymous gamete donation in that it does not rest on the view that knowledge about one's genetic progenitors is essential to self-knowledge, identity formation, or other elements of wellbeing for creatures like us. The view thus attempts to avoid the pitfalls plaguing other criticisms of anonymous gamete donation, which tend to rely on controversial (and likely false) claims of genetic essentialism and/or genetic exceptionalism.Groll's thesis rests on the much more modest (and likely correct) claim that seeking information about one's genetic progenitors is one of many permissible, fruitful, and valuable routes to identity formation. According to Groll, it just so happens that a large portion of donor-conceived individuals aware of the absence of biological ties to one or more social parents choose this route to identity formation. And this empirical fact combined with plausible views about parents' obligations to promote their offspring's wellbeing gives prospective pro-creators strong reason to choose open donors over anonymous donors.Although many aspects of the picture Groll paints are attractive, I remain unconvinced that the overall argument succeeds. My criticism of the argument is multipronged. I am skeptical that failing to disclose to a child that they were donor-conceived and/or failing to disclose information to a child that they are [End Page 201] likely to find important violates the parental duty to build intimate relationships with one's offspring. This shifts the force of Groll's argument to the empirical claim that donor-conceived children are likely to have a significant subjective interest in knowing information about their biological relations. As I will show, the empirical evidence for this claim is not as strong as Groll presumes. In the absence of a deontic argument for disclosure, Groll must provide more robust empirical evidence that anonymous gamete donation is likely to result in off-spring with their weighty interests frustrated, or else argue that the risk is not worth taking. These are not fatal flaws but show that more empirical and normative work needs to be done to defend this line of argument.A more serious set of worries arise in response to Groll's claim that the interest that donor-conceived individuals have in genetic information is likely to be significant. Little is said about what constitutes a significant interest, except that interests fall along a linear spectrum and that the significance of an interest is a factor of "the space, so to speak, it takes up in a person's mental economy (do they think about it a lot?) and the extent to which they organize their lives around it" (2021, 63). My worries here are three-fold. First, it is unclear whether the empirical data support the claim that donor-conceived individuals are likely to have an interest in genetic knowledge that is significant in the sense that it occupies a large portion of their mental energy and is a locus around which they organize their lives. Second, there is scant discussion about whether an interest can become morally problematic (and so no longer worthwhile on Groll's account) if it is given too much weight. I will argue that a plausible reading of Groll's account requires that we treat overvalued interests as no longer worthwhile. Consequently, Groll's argument risks presuming the kind of genetic chauvinism—the view that genetic knowledge is essential to wellbeing—that he seeks to reject. Third, if... (shrink)

In their paper Horton et al argue that it is acceptable to contact an anonymous egg-donor to facilitate diagnostic genetic testing for the donor conceived child, despite the donor, ‘indicating on a historical consent form that she did not wish to take part in future research, and that she did not wish to be informed if she was found to be a carrier of a “harmful inherited condition”’. There are a number of claims (...) embedded in Horton et al’s position that it is acceptable to contact the donor and request that she at least think about participating in genetic testing. In this response. I will go through their main claims and argue that the area of genomic medicine does not justify exceptions to general consent conditions as the authors suppose and conclude that the donor should not be contacted. I will then go on to suggest a policy change that would address Horton et al’s concerns but would not involve over-riding any previously expressed wishes. (shrink)

Misattributed paternity or ‘false’ paternity is when a man is wrongly thought, by himself and possibly by others, to be the biological father of a child. Nowadays, because of the progression of genetics and genomics the possibility of finding misattributed paternity during familial genetic testing has increased. In contrast to other medical information, which pertains primarily to individuals, information obtained by genetic testing and/or pedigree analysis necessarily has implications for other biologically related members (...) in the family. Disclosing or not a misattributed paternity has a number of different biological and social consequences for the people involved. Such an issue presents important ethical and deontological challenges. The debate centres on whether or not to inform the family and, particularly, whom in the family, about the possibility that misattributed paternity might be discovered incidentally, and whether or not it is the duty of the healthcare professional to disclose the results and to whom. In this paper, we consider the different perspectives and reported problems, and analyse their cultural, ethical and legal dimensions. We compare the position of HCPs from an Italian and British point of view, particularly their role in genetic counselling. We discuss whether the Oviedo Convention of the Council of Europe can be seen as a basis for enriching the debate. (shrink)

The vast majority of gamete donations worldwide are made anonymously, and in some countries, including Spain, France, and Denmark, the anonymity of donors is explicitly protected by law. Nonetheless, a growing number of countries have called into question the morality of such practices and are enacting laws allowing children access to identifying information about their gamete donor. A significant reason for the growing legislative support for nonanonymous gamete donations is the belief that donor‐conceived children have a fundamental (...) moral right to know their genetic origins and that the right should be legally protected. A variety of factors, such as the increasing number of children born by means of gamete donation, advances in genetic science and technology that make it easy to discover the identity of a person's genetic parents, and the widespread belief that genetic information is important for protecting people's health, have made this alleged right quite salient, even leading some to challenge the ethical appropriateness of gamete donation practices altogether. Often, however, this right is assumed rather than explicitly justified. The purpose of this paper is to call into question the ethical justifications that are often thought to ground a right to know one's genetic origins.Proponents of a right to know this information usually argue that such a right protects at least three vital interests: the interest of donor‐conceived people in having strong family relationships, their health interests, and their interest in forming a healthy identity. These different interests might be protected by different aspects of the right to know one's genetic origins: knowing one's mode of conception, accessing medically relevant information, and accessing identifying information about one's genetic parents. I will discuss each of these interests and explore whether and how they might be set back by an individual's lack of access to information about his or her genetic parentage. I will also evaluate whether donor anonymity policies are, as many of their opponents argue, morally impermissible because they fail to protect these important interests. (shrink)

This article addresses the child’s right to know their genetic origins in mitochondrial donation. It focuses on the UK’s public debate on mitochondrial replacement techniques and examines the claims-making activities that shaped the donor information regulations. During the public consultation, downplaying the significance of the mitochondria helped distinguish mitochondria donors from gamete donors and determine their relational status with the resulting child. As a result, according to the Mitochondrial Donation regulations, mitochondria donors, unlike (...) gamete donors, will not be required to be identifiable to the resulting child. I argue that, in the UK, similar to donor conception, public understanding of mitochondrial donation is shaped by a “calculus of genes”: simplified accounts of how genes determine the resulting child’s characteristics and identity. While the donor conception regulations ascribe social meaning to the passage of genes, the mitochondria regulations strip the social meaning away from the donation based on the assumption that the genetic contribution made by the donor is quantitatively insignificant in influencing the identity of the resultant offspring. The nature of the genetic material itself should not be considered as a privileged standpoint from which to decide on social meaning of the donation or the rights attached to it. (shrink)

Research involving recently deceased humans that are physiologically maintained following declaration of death by neurologic criteria—or ‘research involving the recently deceased’—can fill a translational research gap while reducing harm to animals and living human subjects. It also creates new challenges for honouring the donor’s legacy, respecting the rights of donor loved ones, resource allocation and public health. As this research model gains traction, new empirical ethics questions must be answered to preserve public trust in all forms of (...) tissue donation and in the practice of medicine while respecting the legacy of the deceased and the rights of donor loved ones. This article suggests several topics for immediate investigation to understand the attitudes and experiences of researchers, clinical collaborators, donor loved ones and the public to ensure research involving the recently deceased advances ethically. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Groll on Bionormativity and the Value of Genetic KnowledgeBradford Skow (bio)1. IntroductionShould people who plan to use donated sperm and/or eggs to conceive a child use an open donor who agrees ahead of time that any resulting children may be told who the donor is? In Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation (Groll 2021), Daniel Groll answers yes. (...) He argues that using an anonymous donor would be wrong. Groll does not discuss adoption in detail, but his ideas also support the claim that people who adopt a child should adopt from parents who agree ahead of time that their child may be told who their biological parents are. It is not OK to have a closed adoption, in which information about the child's biological parents that would otherwise be public (for example, information on their original birth certificate) is kept secret by the government, and where (in some cases) the biological parents are promised that their children will never learn who they are. I was adopted in a closed adoption and met my biological family when I was twenty, and I think Groll's answer to his main question is right. That, however, does not mean I agree with all of his reasons. Here I examine those reasons and sketch some places where I would depart from them.2. The argument in outlineThe basic outline of Groll's argument, in simple terms, is as follows.1. If a child's knowing who their genetic parents are will likely benefit them—that is, if it will make their life go better, or increase their wellbeing—and if this is foreseeable, then that is a reason for parents to make the child's learning this possible (at some "appropriate" time).2. That knowledge will likely benefit the child …3.. … and this is foreseeable. [End Page 182]4. This reason favoring parents making genetic knowledge possible is strong enough that, except in maybe very special circumstances, parents should make this knowledge possible.The first point is hard to dispute. If the second point is true, then the third point is also plausible, since it is foreseeable that a child born from gamete donation (or an adopted child) will likely try to learn who their genetic (or biological) parents are. These searches are common and widely known to occur. Most of the action, therefore, is in the second point. Why think that knowing who your genetic or biological parents are is likely to make your life go better? Here the path diverges into a wood.3. First try: getting what you want makes your life go betterThe simplest way to argue that knowing who your genetic parents are is a benefit is to note that many, if not most, people conceived through gamete donation (or adoption) will, at some point, want—intensely want—to know who their genetic (or biological) parents are. One can then appeal to the idea that getting what you want makes your life go better, other things being equal.1Groll does not like this justification. His objection is that it does not show "that there is anything resembling a deep connection between genetic knowledge and well-being" (Groll 2021, 65). On Groll's view, knowing who your genetic (biological) parents are is a benefit, but this is not simply because it is something you want to know. I might know ahead of time that my child will want to live in a red house, and they might therefore be better off if they get to, and I might do my best to make that possible; but the reason I have to make genetic knowledge available to them is much stronger and much weightier than my reason to help them live in the right colored house. (It may be that this is where the fourth point of the argument, about the strength of reasons, comes in.)So why is the reason to provide genetic knowledge stronger? Groll, I think, holds that some things are more worth wanting than others. Getting what you want may benefit you, but getting what you want when what you want is something... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Being the Right Kind of Parent:Conceiving PeopleCamisha Russell (bio)Daniel Groll's Conceiving People makes one central claim regarding the ethics of using egg or sperm donations to create a child (that one intends to parent): "[P]arents should use an open donor because doing so puts their resulting child in a good position to satisfy the child's likely future interest in having genetic knowledge" (Groll (...) 2021, 12, original italics).Amid myriad thorny ethical questions surrounding assisted reproduction, Groll's decision to focus on a choice that intended parents in need of donor gametes must make before their future child is even conceived—a choice that is typically taken very seriously—makes a lot of sense. The question is live, rarely completely determined as a matter of policy or law, and, as Groll demonstrates, important to most donor-conceived people (and therefore to the families of which they are a part). For this increasing number of individuals and families, a cultural shift in how we think about open versus anonymous donors would have a significant (and as Groll argues, positive) impact.Groll's carefully built argument is important not only for the paths of ethical reasoning that it highlights, but for those common rationales it gently but firmly sets aside (e.g., the donor-conceived person's medical need to know their genetic history or the idea that knowledge of one's genetic origins is the best or only way to truly know oneself). Groll's work is attentive to the types of relationships that foster the emotional health of families, and it's grounded in the experiences and desires articulated by donor-conceived people themselves. For this reader, these are the book's greatest strengths, along with the fact that Groll is often quite funny in his examples, which makes the examples highly relatable.Of course, the challenge for philosophers in writing books of ethical importance for "laypeople" is to offer something an average educated adult can understand while addressing the more technical theoretical issues that matter to ethicists. I would expect Groll's text to satisfy ethicists because his definitions and distinctions are scrupulously clear, and he engages the existing philosophical literature well. As for laypeople, there are surely a few moments in which they will find themselves in the theoretical weeds, so to speak, but Groll has [End Page 193] successfully made the book largely modular, such that they should get a lot from just reading the chapters of direct interest (Groll 2021, 29).Chapter 2, "Keeping Secrets," is essential for intended parents seeking ethical guidance. Groll notes that professional opinion on donor conception has shifted from seeing nondisclosure of a child's donor-conceived status as a moral requirement (to protect privacy and avoid family stigma) to recommending disclosure. He then reviews standard arguments for disclosure: (1) the "profound importance" of known genetic origins to health identity formation, (2) the medical importance of knowing to whom you are (and are not) genetically related, and (3) the harm that keeping secrets can do to family members and family functioning. While Groll agrees with the latter two arguments, he introduces and emphasizes a new argument: the Intimacy argument, in which he convincingly argues that keeping a child's genetic origins secret "violates norms of intimacy by creating distance between parents and children that is at odds with the demands of intimacy in the parent-child relationship" (Groll 2021, 44, original italics). Though, in many ways, this chapter's argument is separate from the central argument for the use of open donors constructed in the rest of the book, I find it compelling and wonder whether it could hold up more of the open donor argument, placing less weight on the Significant Interest view that Groll introduces in the next chapter (and the concerns regarding bionormativity that emerge from that view).In the third chapter, Groll moves from disclosure to the information that's available to be disclosed. That is, it is one thing to commit to telling a child they were donor-conceived after conception. It is another to commit before conception to choosing a donor willing to be known to the future child when... (shrink)

The right not to know is underappreciated in policy-making. Despite its articulation in medical law and ethics, policy-makers too easily let other concerns override the right not to know. This observation is triggered by a recent decision of the Dutch government on embryo selection for Huntington’s disease. This is a monogenetic debilitating disease without cure, leading to death in early middle age, and thus is a likely candidate for preimplantation genetic diagnosis. People possibly affected with the Huntington (...) gene do not always want to know their genetic status themselves, which is very burdensome knowledge. For prospective parents, this creates a difficulty in having unaffected children through embryo selection without knowing their own genetic status. A solution is provided by the exclusion test: it allows embryo selection while honouring the parents’ right not to know. The Dutch government however disallowed the exclusion test and chose to allow PGD on Huntington only for parents who test themselves first. To avoid “unnecessary” in-vitro fertilisation procedures for unaffected parents, prospective parents are “forced to know” before they can conceive through embryo selection. This article analyses the scope of the right not to know in the context of embryo selection against Huntington’s disease. It concludes that the right not to know implies that PGD against Huntington should be allowed by means of the exclusion test. (shrink)

The increasing implementation of next-generation sequencing technologies in the clinical context and the expanding commercial offer of genetic tests directly-toconsumers has increased the availability of previously inaccessible genetic information. A particular concern in both situations is how the volume of novel information will affect the processing of genetic and genomic information from minors. For minors, it is argued that in the provision of genetic testing, their “right not to know” should be respected as (...) much as possible. Testing a minor early in life eliminates the possibility for the minor to make use of his or her “right not to know.” The article discusses the theoretical underpinnings of the right not know, analyzes reasons why various direct-to-consumer companies process samples from minors, and discusses the right not to know in relation to common complex disorders in a pediatric population. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction to the Symposium on Daniel Groll's Conceiving PeopleAlice MacLachlan (bio)The ethics of donor conception is often framed as a straightforward clash of rights: the right of would-be parents to procreate and parent, the right of donor-conceived children to know and be raised by their genetic parents, and the right of gamete (sperm and egg) donors to privacy. But in this thoughtful, wide-ranging (...) discussion of Daniel Groll's book Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation (2021), the ethical terrain is revealed to be far richer and more intricate. As contributor Camisha Russell puts it, the book attends to "the types of relationships that foster the emotional health of families" while remaining grounded in "the experiences and desires articulated by donor-conceived people themselves" as well as those who contribute to their creation and to their family. As a result, the pieces in this symposium not only take up crucial questions of genetics, identity, and bionormativity, they also ask what it means to frame family relationships as a philosophical problem—conceptual, ethical, and, ultimately, political.Groll's central claim is that those who intend to create a child using donated gametes should choose a donor whose identity will be available to the resulting child. This is not because, as David Velleman (2005) and others have argued, knowledge of one's genetic parentage is fundamentally important in some objective sense. Rather, Groll argues that whether such knowledge is actually important, donor-conceived children are likely to come to view it as crucial—developing what Groll calls a "significant interest" in knowing their donor's identity. Further, parents ought to help satisfy their children's significant interest assuming it is not morally problematic. This line of argument places Groll squarely in the realm of what feminists and anti-racist philosophers describe as "theorizing the non-ideal" (Tessman 2009); that is, making philosophical arguments that take as their starting point the world as it is, including the realities of social injustice. Following Charlotte Witt, Sally Haslanger, and other feminists, Groll acknowledges the dominance of the "bionormative conception of the family" (Witt 2014). He considers whether interest in knowing one's genetic parentage might express bionormative prejudice but concludes that, even if it does, [End Page 163] "interest in genetic knowledge can—in our world—be rationally grounded apart from the oppressive schema it is embedded in" (Groll 2021, 149). He further concludes that given a prospective child's likely significant interest in their genetic parentage, would-be parents ought to use an open (i.e., non-anonymous) donor. At the same time, he argues that there are good reasons to disrupt the bionormative schema on both a personal and policy level that may lead to a child's significant interest in the first place.If Groll walks the middle ground in this debate, his critics in this symposium are happy to turn his stroll into a balancing act. Both Reuven Brandt and Amanda Roth challenge Groll's significant interest approach. Brandt questions the extent to which parents owe children a truthful, detailed accounting of their origin, making the case for parental privacy. Roth questions whether the interest in genetic knowledge is rationally grounded beyond bionormative prejudice, offering as a counterexample the offspring of same-sex parents, raised in queer communities of largely nontraditional family configurations. Bradford Skow pushes from the opposite direction, challenging both the claim that bionormative prejudice is at work in the interest in genetic knowledge and, more broadly, that the so-called bionormative conception of the family has the prestige that Groll and others attribute to it in the first place.Also, Amanda Roth and Camisha Russell pressure Groll to go further in considering the nonideal circumstances in which families are formed and theorized. They specify that questions of family configuration and validity are not only conceptual and ethical, they are political. Roth challenges Groll to further consider the example of same-sex and other LGBTQ+ families as disruptive exemplars and recognize that there may be reasons to choose anonymous donation that he has not considered. She highlights the value of solidarity across families and resistance to the forces... (shrink)

In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only (...) be determined in concrete cases. Importantly, when children grow into adolescents, respect for future autonomy will have to give way to respecting their emerging autonomy. When pediatric exome sequencing is done for complex conditions not involving developmental delay, respect for the child’s future or emerging autonomy should be a primary consideration for those charged with deciding on behalf of the child. Building on what Emanuel and Emanuel have termed the ‘deliberative model’ of shared decision making, we argue that if parents fail to give these considerations their due, professionals should actively invite them to do so. Taking a directive stance may be needed in order to make sure that the future or emerging autonomy of the child are duly considered in the decision-making process, but also to help the parents and themselves to shape their respective roles as responsible care-givers. (shrink)

The issue of genetic inheritance, and particularly the contradictory rights of donors, recipients and donor offspring as to the disclosure of donor identities, is ethically complicated. Donors, donor offspring and parents of donor offspring may appeal to individual rights for confidentiality or disclosure within legal systems based on liberal rights discourse. This paper explores the ethical issues of non-disclosure of genetic inheritance by contrasting two principle models used to articulate the problem—liberal (...) and communitarian ethical models. It argues that whilst the latter provides a more constructive avenue to providing an ethics for donation than the competing and contradictory positions represented in a liberal rights approach, it raises issues of ethical judgement and authority that remain problematic. This ethical discussion is supported by a field study, funded by the Wellcome Trust, exploring the perceptions and experiences of recipients of donor sperm and their partners towards donor anonymity. The field study provides the empirical basis of an argument for making ethical judgements on the grounds of the community good rather than individual rights, that nevertheless recognises that both are inherently problematic. (shrink)

Assisted reproduction often involves biological contributions by third parties such as egg/sperm donors, mitochondrial DNA donors, and surrogate mothers. However, these arrangements are also characterised by a biological relationship between the child and at least one intending parent. For example, one or both intending parents might use their own eggs/sperm in surrogacy, or an intending mother might conceive using donor sperm or gestate a donor embryo. What happens when this relationship is absent, as in the case (...) of 'double‐donor surrogacy' arrangements (DDS)? Here, a child is conceived using both donor eggs and sperm, carried by a surrogate, and raised by the commissioning parents. In this paper, I critically examine proposals to allow DDS in the United Kingdom, and the intentionalist justification for treating this practice distinctly (morally and legally speaking) from private adoption. I argue that the intentionalist approach cannot plausibly justify such a distinction and that other approaches to moral parenthood are also unlikely to succeed. (shrink)

Bioethicists have for quite some time discussed the right to know and the right not to know personal health information, such as genetic information acquired in health care and incidental health-related findings in research. Several international ethical guidelines explicitly defend these rights.My own interest in these matters stems from my participation in ethics-related research tied to a longitudinal screening study on Type I diabetes involving young children. A few of the participating parents did not want to (...) be informed if the study revealed their child had a high risk of developing diabetes. This response was troublesome, not least since the information would concern the child's and not the parents’ health. Our inclination was that there cannot be a right not to know that should be granted without qualifications. Furthermore, other contextual factors, e.g., that parents experienced pressure to participate and felt concern about some of the personal data handled in the study, gave reason to question whether autonomous decisions were made regarding participation. The autonomy of their expressed desire not to know was therefore questionable. (shrink)

The ratification of the United Nations Convention on the Rights of the Child (UNCRC) demands that those participating nations, adopt the aims of the convention as state responsibilities toward their child citizens. The central premise of the convention is clear: that it is the right of all children to develop to their full potential. The authors propose six basic interdependent developmental requirements if the child is to reach ‘full potential’. Without prioritising any one need, (...) but instead concentrating on the facilitation of complete care of the child, the paper aims to examine how the UNCRC may finally be realised. This is achieved by highlighting several key situations and associated factors, which contribute to deficient care. Whilst the factors leading to the creation of such situations are often culturally specific, the consequences for the child, and the implications for care providers (parents, aid agencies, and policy makers), are often very similar within and between continents. (shrink)

Preimplantation genetic diagnosis (PGD) raises serious moral questions concerning the parent-child relationship. Good parents accept their children unconditionally: they do not reject/attack them because they do not have the features they want. There is nothing wrong with treating a child as someone who can help promote some other worthwhile end, providing the child is also respected as an end in him or herself. However, if the child's presence is not valued in itself, regardless of (...) any further benefits it brings, the child is not being treated as an end in the full sense of the term. In this paper, I argue that these principles apply to human embryos, as well as to born human offspring: the human moral subject is a bodily being, whose interests and rights begin with the onset of his or her bodily life. The rights of the living, bodily human individual include a right not to be attacked/abandoned because of his or her genetic profile. PGD is harmful to the parent-child relationship, and we give mixed messages to parents by expecting them to show unconditional commitment to offspring after birth, while inviting them to take a very different approach at the prenatal stage. (shrink)

A rich literature in bioethics argues against the use of anonymous gamete donation in the name of the ‘interest in knowing one’s genetic origins’. This interest stems from medical as well as psychosocial and identity reasons. The term ‘genealogical bewilderment’ has been coined to express the predicament of those deprived of access to information about their origins. Another rich body of literature in bioethics discusses arguments for and against posthumous-assisted reproduction (PAR), with a recent focus on PAR that (...) is initiated by the parents of a deceased man (rather than his partner). This paper revisits arguments against PAR, in light of arguments regarding the interest in knowing one’s genetic origins. Limiting the discussion to the specific context of parent-initiated PAR (PIPAR), we argue that the use of cryopreserved sperm from a deceased identifiable man in the context of PIPAR may be ethically preferable when compared with the use of anonymous donor sperm, since it allowsgenealogical certainty, that is, giving the prospective child access to information about the identity, life story and ancestry of the genetic progenitor as well asgenealogical embeddedness, that is, close relationship with extended family members. (shrink)

This dissertation considers the bases upon which ethical assessments of parental genetic trait selections for their children can be made. It argues that if parents engage in genetic trait selections, they must act to expand their child's range of open futures, not to constrict their child's range of open futures or to differentially shift their child's range of open futures. It contends that other proposed distinctions, including distinctions between normal and diseased (...) states and between treatment selections and enhancement selections, do not provide a sound basis for making ethical assessments of parental genetic trait selections. It contends that children have a right to an open future that parents hold in trust for their children and that parents must respect in making genetic trait selections.It considers examples of possible parental genetic trait selections regarding children's hearing, height and visual acuity. Finally, it addresses a number of concerns about and objections to this proposed basis for ethical assessment and to parental genetic trait selection generally but concludes that none of these concerns or objections are fatal the approach that if parents use parental genetic trait selection, they must do so in ways that expand their child's range of open futures. (shrink)

An increasing number of children are adopted in the United States from countries where both medical care and environmental conditions are extremely poor. In response to worries about the accuracy of medical histories, prospective adoptive parents increasingly request genetic testing of children prior to adoption. Though a general consensus on the ethics of pre-adoption genetic testing (PAGT) argues against permitting genetic testing on children available for adoption that is not also permitted for children in (...) general, a view gaining traction argues for expanding the tests permitted. The reasoning behind this view is that the State has a duty to provide a child with parents who are the best “match,” and thus all information that advances this end should be obtained. While the matching argument aims to promote the best interests of children, I show how it rests on the claim that what is in the best interests of children available for adoption is for prospective adoptive parents to have their genetic preferences satisfied such that the “genetics” of the children they end up adopting accurately reflects those preferences. Instead of protecting a vulnerable population, I conclude, PAGT contributes to the risks of harm such children face as it encourages people with strong genetic preferences to adopt children whose genetic backgrounds will always be uncertain. (shrink)

Although deeply committed to the model of nondirective counseling, most genetic counselors enter the profession with certain assumptions about health and disability—for example, that it is preferable to be a hearing person than a deaf person. Thus, most genetic counselors are deeply troubled when parents with certain disabilities ask for assistance in having a child who shares their disability. This ethical challenge benefits little from viewing it as a conflict between beneficence and autonomy. The challenge is (...) better recast as a conflict between parental autonomy and the child's future autonomy. (shrink)

This Article considers the moral and legal status of practices that aim to modify traits in human offspring. As advancements in reproductive biotechnology give parents greater power to shape the genetic constitution of their children, an emerging school of legal scholars has ushered in a privatized paradigm of genetic control. Commentators defend a constitutionally protected right to prenatal engineering by appeal to the significance of procreative liberty and the promise of producing future generations who are more likely (...) to have their lives go well. This 'new eugenics,' however, confronts us with ethical challenges that neither liberal arguments about autonomy, fairness, and consent, nor utilitarian arguments about preferences, happiness, and equality, are able to capture. I begin by analyzing the Supreme Court's modern substantive due process jurisprudence, as it bears on recent advancements and controversies in genetic science. After developing a doctrinal framework that could support an asserted right to genetic engineering, I draw on empirical research in behavioral psychology to examine the influence of eugenic norms on egalitarian attitudes and institutions. I predict that if parents become accustomed to choosing the genes of their children, it would be radically more difficult to give an influential account for why the successful should adopt a charitable posture toward those who are less fortunate. I argue that by shifting control over offspring DNA from chance to choice, enhancement will inflate a sense of individual entitlement for social and economic outcomes. I conclude that increasing willingness to prevent the birth of abnormal children distracts attention from institutions that fail to accommodate the limitations of imperfect people. Some may reply that producing people who better fit the roles society chooses to reward need not deter us from providing for people whose abilities fail to meet the demands of modern society. However, this reply misses the way that changes in reproductive practices can bring about changes in the way that we understand our identities and relationships. Eugenic solutions to social problems such as poverty, crime, and unemployment reshape the challenge of genetic disadvantage so that it is no longer one we address through collective measures such as public education, social services, and income redistribution, and instead becomes one for individual parents to prevent through donor screening, embryo discard, or selective abortion. (shrink)

We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she (...) was found to be a carrier of a ‘harmful inherited condition’. We suggest that we cannot conjecture what her current answer might be if, by participating in clinical genetic testing, she might help reach a diagnosis for the donor-conceived child. At the point that she made choices regarding future contact, it was not yet evident that the interests of the donor-conceived child might be compromised by her answers, as it was not foreseen that the egg donor’s genome might one day have the potential to enable diagnosis for this child. Fertility consent forms tend to be conceptualised as representing incontrovertible historical boundaries, but we argue that rapid evolution in genomic practice means that consent in such cases is better seen as an ongoing and dynamic process. It cannot be possible to compel the donor to aid in the diagnosis of the donor-conceived child, but she should be given the opportunity to do so. (shrink)

In this paper, I analyze the ethical implications of genetic enhancement within the specific framework of the “child’s right to an open future” argument (CROF). Whilst there is a broad ethical consensus that genetic modifications for eradicating diseases or disabilities are in line with – or do not violate – CROF, there is huge disagreement about how to ethically understand genetic enhancement. Here, I analyze this disagreement and I provide a revised formulation of the argument in (...) the specific field of genetic enhancement. First, I argue that CROF is not in contrast with every kind of enhancement. I subsequently discuss whether CROF requires some moral obligations to enhance progeny. My argument is that parents do not have the moral obligation to open as many options as possible for their children. Rather, they should provide them with a reasonable range of opportunities. Finally, I contend that the moral obligations required by CROF are directly dependent on what Allen Buchanan calls the ‘dominant cooperative framework’ in a given society. I conclude by claiming that, at present, parents are not morally obliged to genetically enhance their children since a non-enhanced person already might have access to a reasonable range of opportunities. However, the moral obligation to enhance progeny might arise if a structural modification of the dominant cooperative framework occurs. (shrink)

The principle of the child's right to an open future was first proposed by the legal philosopher Joel Feinberg and developed further by bioethicist Dena Davis. The principle holds that children possess a unique class of rights called rights in trust—rights that they cannot yet exercise, but which they will be able to exercise when they reach maturity. Parents should not, therefore, take actions that permanently foreclose on or pre-empt the future options of their children, (...) but leave them the greatest possible scope for exercising personal life choices in adulthood. Davis particularly applies the principle to genetic counselling, arguing that parents should not take deliberate steps to create physically abnormal children, and to religion, arguing that while parents are entitled to bring their children up in accordance with their own values, they are not entitled to inflict physical or mental harm, neither by omission nor commission. In this paper, I aim to elucidate the open future principle, and consider whether it is applicable to non-therapeutic circumcision of boys, whether performed for cultural/religious or for prophylactic/health reasons. I argue that the principle is highly applicable to non-therapeutic circumcision, and conclude that non-therapeutic circumcision would be a violation of the child's right to an open future, and thus objectionable from both an ethical and a human rights perspective. (shrink)

In this paper I examine what I take to be the best case for reproductive human cloning, as a medical procedure designed to overcome infertility, and argue that it founders on an irresolvable tension in the attitude towards the importance of being ‘genetically related’ to our children implied in the desire to clone. Except in the case where couples are cloning a child they have previously conceived naturally, cloning is unable to establish the right sort of genetic relation (...) to make couples the parents of their cloned child. If anybody is the genetic parent of a cloned child it is the natural parent(s) of the DNA donor. Paradoxically, in order to resist the claims of the parents of the donor to the cloned child, the argument for human reproductive cloning must place more weight on the intention to parent a child, than we do in cases of ordinary reproduction. It must insist that the parental relation is established by the intentions of the couple who bring a clone into the world and not by their genetic relation to the child. The emphasis placed on intention as establishing the parental relationship works to undermine the justification for cloning in the first place. For cloning to play a useful role as a reproductive technology, it must allow couples to become parents who could do so no other way. However, to the extent that intention is sufficient to establish parenthood, adoption or surrogacy, which are existing alternatives to cloning, will serve equally well to allow couples to become parents. (shrink)

Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to (...) class='Hi'>know, and the child’s right to an open future—frequently invoked in discussions of predictive genetic testing, in order to explore their potential contribution to evaluating this new practice. Ultimately, we conclude that traditional clinical and public health ethics frameworks, and these two rights in particular, should be complemented by a social justice perspective in order adequately to characterize the ethical dimensions of general population PGS programs. (shrink)

This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer. 50 were invited to participate. 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested (...) as ‘common sense’; the idea of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow ‘common sense’ were judged to be imprudent. Family members who declined testing were discussed negatively by participants. The article addresses what is ethically problematic about how test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners’ decisions by expressing a preference for or defending choice over responsibility. The ‘right not to know’ seemed an important moral construct to help ethically manage unpopular decisions made by close family who declined testing. In light of this research, the erosion of the ‘right not to know’ in the genomic age could have subtle yet profound consequences for family relationships. (shrink)

Existing empirical research often do not explain which concepts about genetics underlie the assumption that genetic information is deemed important for donor-conceived offspring. This study focused on how donor-conceived individuals following anonymous sperm donation give meaning to and make sense of genes and genetics. Analysis is based on focus groups and interviews with adult donor-conceived offspring. Findings suggest that genes are part of their specific context of being donor-conceived but also play a role in (...) daily life. Genes make sense on an individual level and a relational level, both on parent-child as sibling-level. On an individual level they were perceived as (1) a biological starting package, (2) their own unique combination and (3) as a reference point. On a relational level, genes were seen as (1) “person-al”, (2) connecting and (3) locating individuals. This information is essential for those supporting/counseling donor conceived offspring and families as well as for policy-members. (shrink)

Over 115 000 people are waiting for life-saving organ transplants, of whom a small fraction will receive transplants and many others will die while waiting. Existing efforts to expand the number of available organs, including increasing the number of registered donors and procuring organs in uncontrolled environments, are crucial but unlikely to address the shortage in the near future and will not improve donor/recipient compatibility or organ quality. If successful, organ bioengineering can solve the shortage and improve functional outcomes. (...) Studying manufactured organs in animal models has produced valuable data, but is not sufficient to understand viability in humans. Before risking manufactured organ experimentation in living humans, study of bioengineered organs in recently deceased humans would facilitate evaluation of the function of engineered tissues and the complex interactions between the host and the transplanted tissue. Although such studies do not pose risk to human subjects, they pose unique ethical challenges concerning the previous wishes of the deceased, rights of surviving family members, effective operation and fair distribution of medical services, and public transparency. This article investigates the ethical, legal and social considerations in performing engineered organ research on the recently deceased. (shrink)

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. (shrink)

The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. (...) This book considers the right to know and the right not to know about your own and others’ genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media. (shrink)

A growing number of jurisdictions hold that gamete donors must be identifiable to the children born with their eggs or sperm, on grounds that being able to know about one's genetic origins is a fundamental moral right. But the argument for that belief has not yet been adequately made.

In this chapter, I argue that children who were selected for particular traits or genetically enhanced might feel, for this reason, less securely, spontaneously and fairly loved by their parents, which would constitute significant harm. ‘Parents’ refers, throughout this chapter, to the people who perform the social function of rearing children, rather than to procreators. I rely on an understanding of adequate parental love which includes several characteristics: parents should not make children feel they are loved conditionally, for features (...) such as intelligence, looks or temperament; they should not burden children with parental expectations concerning particular achievements of the child; and parental love is often expressed in spontaneous enjoyment and discovery of children’s features. This understanding of parental love provides a reason to question the legitimacy of parental use of selection and enhancement and to explain why parents should not engage on a quest for the ‘best child’. (shrink)

Prenatal genetic testing is becoming available for an increasingly broad set of diseases, and it is only a matter of time before parents can choose to test for hundreds, if not thousands, of genetic conditions in their fetuses. Should access to certain kinds of fetal genetic information be limited, and if so, on what basis? We evaluate a range of considerations including reproductive autonomy, parental rights, disability rights, and the rights and interests (...) of the fetus as a potential future child. We conclude that parents should be able to access information that could be useful during pregnancy, but that testing for non-medical information should be limited. Next, we argue that the government lacks a compelling state interest in regulating prenatal genetic testing and propose that regulation should occur through medical professional organizations. Finally, we present a framework for determining what testing physicians should recommend, offer neutrally, or not offer at all. (shrink)

In “The Ethics of Anonymous Gamete Donation: Is There a Right to Know One's Genetic Origins?,” Inmaculada de Melo‐Martín deconstructs the interests the right is supposed to protect. She argues that these interests are not set back or thwarted when one has no access to one's genetic origins. The basis of her argument is that we lack robust empirical evidence that donor‐conceived individuals suffer certain alleged harms, and that even when such harms are present, they do (...) not provide strong enough justification to ground the right.Indeed, the research on the needs, preferences, and well‐being of donor‐conceived individuals is scant. In fact, we lack robust empirical evidence regarding all aspects of donor conception. I argue, however, that the right to know one's genetic origins does not rest on empirical evidence. Some donor‐conceived individuals who are unable to know their genetic origins may suffer great harms. Others may suffer no harm at all. But all are treated wrongly when they are deprived of the ability to access information about their genetic origins. They are deprived of an important aspect of their autonomy: the liberty to choose what meaning they assign to the genetic components of their identity. (shrink)

Internationally, there is considerable inconsistency in the recognition and regulation of children's genetic connections outside the family. In the context of gamete and embryo donation, challenges for regulation seem endless. In this paper, I review some of the paths that have been taken to manage children' being closely genetically related to people outside their families. I do so against the background of recognising the importance of children's interests as moral status holders. I look at recent qualitative research involving (...) donor-conceived people and borrow their own words to make sense of a purported interest to know (of) their close genetic ties. I also review ways in which gamete donation may have facilitated new kinds of kinship, which are at the same time genetic and chosen. In short, in this paper, I explore what meaning there could be in genetic connections that is not about parenthood. Further, I argue that the focus on parenthood in previous work in this area may be detrimental to appreciating some of the goods that can be derived from close genetic connections. (shrink)

ABSTRACTIn 1994, the Committee on Assessing Genetic Risks of the Institute of Medicine published their recommendations regarding the ethical issues raised by advances in genetics. One of the Committee's recommendation was to inform women when test results revealed misattributed paternity, but not to disclose this information to the women's partners. The Committee's reason for withholding such information was that “'genetic testing should not be used in ways that disrupt families”. In this paper, I argue that (...) the Committee's conclusion in favour of nondisclosure to the male partner is unethical. I argue that both parties ought to be informed. (shrink)

Countries that abolished donor anonymity have imposed age limits for access to certain types of information by donor offspring. In the UK and the Netherlands, a debate has started on whether these age limits should be lowered or abolished all together. This article presents some arguments against lowering the age limits as a general rule for all donor children. The focus is on whether one should give a child the right to obtain the identity of the (...) donor at an earlier age than is presently stipulated. The first argument is that there is no evidence that a change in age will increase the total well-being of the donor offspring as a group. The second argument stresses that the rights language used for the donor-conceived child isolates the child from his or her family and this is unlikely to be in the best interest of the child. Finally, lowering the age limit reintroduces the genetic father in the family and expresses the bionormative ideology that contradicts gamete donation as a practice. (shrink)