The aim of this paper is to scrutinize a contemporary standoff in the American debate over the moral permissibility of human reproductive cloning in its prospective use as a eugenic enhancement technology. I shall argue that there is some significant and under-appreciated common ground between the defenders and opponents of human cloning. Champions of the moral and legal permissibility of cloning support the technology based on the right to procreative liberty provided it were to become as safe as in vitro (...) fertilization and that it be used only by adults who seek to rear their clone children. However, even champions of procreative liberty oppose the commodification of cloned embryos, and, by extension, the resulting commodification of the cloned children who would be produced via such embryos. I suggest that a Kantian moral argument against the use of cloning as an enhancement technology can be shown to be already implicitly accepted to some extent by champions of procreative liberty on the matter of commodification of cloned embryos. It is in this argument against commodification that the most vocal critics of cloning such as Leon Kass and defenders of cloning such as John Robertson can find greater common ground. Thus, I endeavor to advance the debate by revealing a greater degree of moral agreement on some fundamental premises than hitherto recognized. (shrink)

Margaret Mohrmann, Paul Lauritzen, and Sumner Twiss raise questions about my account of basic interests, liberal theory, and the challenges of multiculturalism as developed in "Children, Ethics, and Modern Medicine." Their questions point to foundational issues regarding the justification and limitation of parental authority to make decisions on behalf of children in medical and other contexts. One of the central questions in that regard is whether adults' decisions deserve to be respected, especially when they seem contrary to a child's or (...) adolescent's basic interests. Questions about respect, in turn, focus attention on others' decisions about what seems good for families and children, decisions that may be paternalistic or utilitarian. Such decisions are further complicated by a child's or adolescent's budding autonomy and need for respect and recognition. Pediatric bioethics grounded in an account of a child's basic interests produces a theory of negative and positive rights for assessing adults' actions in relation to children, especially (but not only) when adults demand respect in their expressions of care. (shrink)

When infertility clinics offer money-back guarantees, they prefer to give them more delicate names such as “shared risk,” “warranty,” or “outcome” programs. We should not allow such daintiness to distract us from the bottom line of these programs which are all about the bottom line.John Robertson and Theodore Schneyer defend such programs as special forms of insurance, what they call “risk-of-failure insurance.” They argue, in “Professional Self-Regulation and Shared-Risk Programs for In Vitro Fertilization,” that the criticisms of in vitro fertilization (...) shared-risk programs by the American Medical Association and others are off the mark. It would be sufficient, Robertson and Schneyer contend, to develop guidelines for informed consent or protocols that discourage risky clinical procedures. They acknowledge that shared risk plans “present problems if not offered with full disclosure and attention to patient interests,” but they insist that “there is no reason why they cannot be implemented in an ethically sound way.”. (shrink)

When infertility clinics offer money-back guarantees, they prefer to give them more delicate names such as “shared risk,” “warranty,” or “outcome” programs. We should not allow such daintiness to distract us from the bottom line of these programs which are all about the bottom line.John Robertson and Theodore Schneyer defend such programs as special forms of insurance, what they call “risk-of-failure insurance.” They argue, in “Professional Self-Regulation and Shared-Risk Programs for In Vitro Fertilization,” that the criticisms of in vitro fertilization (...) shared-risk programs by the American Medical Association and others are off the mark. It would be sufficient, Robertson and Schneyer contend, to develop guidelines for informed consent or protocols that discourage risky clinical procedures. They acknowledge that shared risk plans “present problems if not offered with full disclosure and attention to patient interests,” but they insist that “there is no reason why they cannot be implemented in an ethically sound way.”. (shrink)

I develop a model of love or care between children and their parents guided by experiences of parents, especially mothers, with disabilities. On this model, a caring relationship requires both parties to be aware of each other as a particular person and it requires reciprocity. This does not mean that children need to be able to articulate their interests, or that they need to be self-reflectively aware of their parents’ interests or personhood. Instead, parents and children manifest their understanding of (...) one another as unique, irreplaceable individuals, with identifiable needs and interests through their interactions with one another. (shrink)

Several factors related to fetal risk render it more or less acceptable in justifying constraints on the behavior of pregnant women. Risk is an unavoidable part of pregnancy and childbirth, one that women must balance against other vital personal and family interests. Two particular issues relate to the fairness of claims that pregnant women are never entitled to put their fetuses at risk: relative risks and relatives' risks. The former have been used—often spuriously—to advance arguments against activities, such as home (...) birth, that may incur risk; the latter implicate the nature of relationships in determining the acceptability of coercing or precluding activities. Motivated reasoning by clinicians and judges leads to inaccurate risk assessments, and judgments based on false claims to objectivity. Such judgments undermine the moral and legal standing of pregnant women and do not advance the interests of fetuses, pregnant women, families, or states. (shrink)

The identification and avoidance of disease susceptibility in embryos is the most common goal of preimplantation genetic diagnosis (PGD). Most jurisdictions that accept but regulate the availability of PGD restrict it to what are characterized as ‘serious’ conditions. Line-drawing around seriousness is not determined solely by the identification of a genetic mutation. Other factors seen to be relevant include: impact on health or severity of symptoms; degree of penetrance (probability of genotype being expressed as a genetic disorder); potential for therapy; (...) rate of progression; heritability; and age of onset. In the original applications of PGD, most, if not all of these factors were seen as necessary but none was seen as sufficient for determining whether a genetic condition was labelled ‘serious’. This, however, is changing as impact on health or severity of symptoms is coming to eclipse the other considerations. This paper investigates how age of onset (primarily in the context of the United Kingdom (UK)) has become considerably less significant as a criterion for determining ethically acceptable applications of PGD. Having moved off the threshold of permitting PGD testing for only fatal (or seriously debilitating), early-onset diseases, I will investigate reasons for why age of onset will not do any work to discriminate between which adult-onset diseases should be considered serious or not. First I will explain the rationale underpinning age of onset as a factor to be weighed in making determinations of seriousness. Next I will challenge the view that later-onset conditions are less serious for being later than earlier-onset conditions. The final section of the paper will discuss some of the broader disability concerns at stake in limiting access to PGD based upon determinations of the ‘seriousness’ of genetic conditions. Instead of advocating a return to limiting PGD to only early-onset conditions, I conclude that the whole enterprise of trying to draw lines of what is to count as a ‘serious’ condition is itself problematic and in certain ways morally misleading. (shrink)

Bakgrunn: Preimplantasjonsgenetisk diagnostikk er en genetisk undersøkelse av befruktede egg før de settes inn i livmoren i forbindelse med assistert reproduksjon. Hensikten med PGD er å unngå at det fremtidige barnet får en alvorlig arvelig sykdom, og at par som på grunn av arvelig sykdom har vansker med å få barn, kan få avkom. PGD er kontroversielt og et sentralt tema for den pågående vurderingen og revisjonen av bioteknologiloven.Metode: Paradoksteori anvendes for å identifisere og analysere noen av kontroversene ved PGD. (...) Det skilles mellom tilsynelatende paradokser, antinomier og aporier. Materialet er offentlige dokumenter, debattinnlegg og faglitteratur.Resultater: Det finnes en rekke tilsynelatende paradokser på PGD-ens område, slik som at PGD gjøres selv om det er svært liten sannsynlighet for at det blir født et alvorlig sykt barn, og at det gjøres PGD for mindre alvorlige sykdommer når forutsetningen for PGD er alvorlig arvelig sykdom. Samtidig finnes det også antinomier: At PGD gir rett til helsehjelp uten at det eksisterer noen pasient, og at PGD gjennomføres selv ved høye kostnader og lav suksessrate. Om embryoet og fosteret har moralsk status og rett på beskyttelse, synes å utgjøre en apori.Konklusjon: Å formulere moralske utfordringer som paradokser kan være en fruktbar måte å tydeliggjøre utfordringer og motsetninger på. Dessuten kan det styre innsatsen: Vi bør bestrebe oss på å rydde opp i tilsynelatende paradokser, jobbe hardere med grunnlagsutfordringene ved antinomier og til en viss grad akseptere motsetningene ved aporiene.Nøkkelord: Preimplantasjonsgenetisk diagnostikk, paradoks, antinomi, aporiEnglish summary: PGD's ParadoxesBackground: Pre-implantation genetic diagnosis is a genetic test of embryos before implantation as part of in vitro fertilization. The purpose of using PGD is to help people avoid having children with serious genetic disease and to help those with genetically based infertility to have children. PGD has been controversial and is assessed as part of the revision of the Norwegian biotechnology act.Method: Paradox theory is used to identify and analyse controversies with PGD. It distinguishes between resolvable paradoxes, antinomies and aporias. The material comprises official documents, public debates, and professional publications.Results: Many resolvable paradoxes are identified with PGD, such as that PGD is done even in cases where there is very little chance that a seriously ill child will be born and in case of diseases that are not considered to be «serious inheritable disease,» as required by the law. At the same time, there are antinomies: PGD is subsumed within a patient's rights even if there is no patient, and PGD is done even when the success rate is low and the expenses are high. Whether the embryo and the foetus have a right to protection appears to be an aporia.Conclusion: Analysing moral problems in terms of paradoxes may be a fruitful way of displaying challenges and conflicts. Moreover, it may give focus and direction to our endeavours. That is, we should try to resolve the resolvable paradoxes and work harder with the conflicts of the antinomies, and, to a certain extent, to accept the antagonisms of the aporias. (shrink)

Abstract:What is in the best interests of a child, and could that ever include interventions that we might regard as prima facie detrimental to a child’s physical well-being? This question is raised a fortiori by growth attenuation treatments in children with severe neurological disorders causing extreme developmental delay. I argue that two principles that provide guidance in generating a conception of best interests for each individual child yield the right results in such cases. The principles are as follows: thepotentiality principle, (...) whereby every child should be able to develop its potential and is entitled to receive certain help in doing so, and theprinciple of psychosomatic harmony, whereby every human being is entitled to treatment that is appropriate to or enables a life in which mind and body are in tune with each other. These principles indicate a certain response to what we can call Ashley-type cases and admit certain caveats. (shrink)

ABSTRACT Does genetic relatedness define who is a mother or father and who incurs obligations towards or entitlements over children? While once the answer to this question may have been obvious, advances in reproductive technologies have complicated our understanding of what makes a parent. In a recent publication Bayne and Kolers argue for a pluralistic account of parenthood on the basis that genetic derivation, gestation, extended custody and sometimes intention to parent are sufficient (but not necessary) grounds for parenthood.1 Bayne (...) and Kolers further suggest that definitions of parenthood are underpinned by the assumption that ‘being causally implicated in the creation of a child is the key basis for being its parent’.2 This paper examines the claim that genetic relatedness is sufficient grounds for parenthood based on a causal connection between genetic parents and their offspring. I argue that parental obligations are about moral responsibility and not causal responsibility because we are not morally accountable for every consequence to which we causally contribute. My account includes the conditions generally held to apply to moral responsibility, i.e. freedom and foreseeability. I argue that parental responsibilities are generated whenever the birth of a child is a reasonably foreseeable consequence of voluntary actions. I consider the implications of this account for third parties involved in reproductive technologies. I argue that under some conditions the obligations generated by freely and foreseeably causing a child to exist can be justifiably transferred to others. (shrink)

Advocates for the professionalization of clinical bioethics argue that bioethics professionals play an important role in contemporary medicine and patient care, especially when addressing complex ethical questions that arise in the delivery of reproductive medicine. For bioethics consultants to serve effectively, they need adequate training in the medical and ethical issues that patients and clinicians will face, and they need skills to facilitate effective dialog among all parties. Because clinical ethics consultation is a “high‐stakes endeavor” that can acutely affect patient (...) care, efforts are under way to ensure that bioethics consultants have the competence to provide such guidance. Yet to date, no studies have examined whether the training of bioethics consultants meets the needs of health care professionals who are on the front lines of such issues. In fact, limited information is available on the reproductive health issues that bioethics training programs address or the degree to which these programs meet the needs of patients confronting reproductive health decisions and their clinicians. It is therefore important to answer this key question: What are the primary ethical issues encountered in reproductive medicine that currently affect patient care? Equally important, are bioethics training programs prepared to address those issues?To begin to answer these questions, we conducted parallel surveys of directors of graduate bioethics training programs and obstetrician‐gynecologists. The goal of this project is to lay the groundwork to establish a working partnership between bioethics educators and reproductive medicine practitioners to address the often troubling and frequently complex ethical issues in reproductive medicine. (shrink)

Genetic counseling is viewed as a therapeutic interrelationship between genetic counselors and their clients. In a previous relational ethics research project, various themes were identified as key components of relational ethics practice grounded in everyday health situations. In this article the relational ethics approach is further explored in the context of genetic counseling to enhance our understanding of how the counselor-client relationship is contextually developed and maintained. Qualitative interviews were conducted with six adult clients undergoing genetic counseling for predictive testing. (...) Engagement, dialogue and presence were revealed as relevant to genetic counselor-client relationships. A relational ethics approach in genetic counseling challenges the concept of nondirectiveness and may enhance the outcome of counseling for both counselor and client. (shrink)

Is the wish to be biologically related to your children legitimate? Here, I respond to an argument in support of a negative answer to this question according to which a preference towards having children one is biologically related to is analogous to a preference towards associating with members of one’s own race. I reject this analogy, mainly on the grounds that only the latter constitutes discrimination; still, I conclude that indeed a preference towards children one is biologically related to is (...) morally illegitimate because, in the context of parental love, biological considerations are normatively irrelevant. (shrink)

Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

Noninvasive, prenatal whole genome sequencing may be a technological reality in the near future, making available a vast array of genetic information early in pregnancy at no risk to the fetus or mother. Many worry that the timing, safety, and ease of the test will lead to informational overload and reproductive consumerism. The prevailing response among commentators has been to restrict conditions eligible for testing based on medical severity, which imposes disputed value judgments and devalues those living with eligible conditions. (...) To avoid these difficulties, we propose an unrestricted testing policy, under which prospective parents could obtain information on any variant of known significance after a careful informed consent process that uses an interactive decision aid to deliver a mandatory presentation on the purposes, techniques, and limitations of genomic testing, as well as optional resources for reflection and consultation. This process would encourage thoughtful, informed deliberation... (shrink)

Preimplantation genetic diagnosis is a new method of prenatal diagnosis that is developing from a union of in vitro fertilization technology and molecular biology. Briefly stated, PGD involves the creation of several embryos in vitro from the eggs and sperm of an interested couple. The embryos are permitted to develop to a 6-to-10-cell stage, at which point one of the embryonic cells is removed from each embryo and the cellular DNA is analyzed for chromosomal abnormalities or genetic mutations. An embryo (...) or several embryos found to be free of genetic abnormalities are subsequently transferred to the woman's uterus for gestation. Embryos found to carry a genetic abnormality are discarded or frozen. Extra normal embryos may be frozen for future transfer or donation to another couple. (shrink)

Preimplantation genetic diagnosis is a new method of prenatal diagnosis that is developing from a union of in vitro fertilization technology and molecular biology. Briefly stated, PGD involves the creation of several embryos in vitro from the eggs and sperm of an interested couple. The embryos are permitted to develop to a 6-to-10-cell stage, at which point one of the embryonic cells is removed from each embryo and the cellular DNA is analyzed for chromosomal abnormalities or genetic mutations. An embryo (...) or several embryos found to be free of genetic abnormalities are subsequently transferred to the woman's uterus for gestation. Embryos found to carry a genetic abnormality are discarded or frozen. Extra normal embryos may be frozen for future transfer or donation to another couple. (shrink)

Frances Kamm's characteristically subtle paper in response to Michael Sandel is an intriguing intervention in the long-standing and increasingly frustrating debate over the morality of enhancement...

Much has been written about the ethics of sex selection. This article thoroughly explores the ethical arguments put forth in the literature both for and against non-medical sex selection using sperm sorting. While most of these arguments come from philosophers, feminist scholars, social scientists and members of the healthcare community, they are often echoed in empirical studies that have explored community values. This review is timely because the first efficacious method for sex selection via sperm sorting, MicroSort, is currently in (...) clinical trials and moving closer to FDA approval for marketing in the USA. While the clinical trials are currently focused on the use of MicroSort to avoid X-linked genetic diseases, MicroSort can also be used to satisfy parental preferences. (shrink)

This study is a contribution to the bioethical debate about new and possibly emerging reproductive technologies. Its point of departure is the intuition, which many people seem to share, that using such technologies to select non-disease traits – like sex and emotional stability - in yet unborn children is morally problematic, at least more so than using the technologies to avoid giving birth to children with severe genetic diseases, or attempting to shape the non-disease traits of already existing children by (...) environmental means, like education. The study employs philosophical analysis for the purpose of making this intuition intelligible and judging whether it is justified. Different ways in which the moral problems posed by reproductive technologies are often framed in bioethical debates are criticised as inadequate for this task. In particular, it is argued that the intuition cannot fully be made sense of in terms of harm to the children that such technologies help create. The study attempts to elaborate an alternative to that broadly consequentialist approach, by drawing on Martin Heidegger’s philosophy of technology, Hans Jonas’s ethics, and Aristotle’s practical philosophy, as it has been received and developed in the hermeneutical tradition. It is suggested that reproductive choices, unlike decisions for already born children, are characterised by a peculiar one-sidedness: the future child appears to the parents as something wholly theirs to decide about, not as a concrete other with whom they must interact in a responsive and attuned way. This is problematic because it means that such choices cannot call upon the particularised moral understanding only gained in interpersonal encounters. In particular, it makes them easily shaped by various tendencies, to which parents are always susceptible, to relate to children in instrumentalising ways, and at risk of reinforcing such tendencies. However, this does not mean that all uses of reproductive technologies are equally troubling. When selecting against severe disease the parents can rely on a widely shared illness experience to escape the dangers that one-sidedness involves. It is concluded that the intuition under discussion, thus explicated and in some ways qualified, makes sense morally. (shrink)