Human-nonhuman chimeric research—research on nonhuman animals who contain human cells—is being used to understand human disease and development and to create potential human treatments such as transplantable organs. A proposed advantage of chimeric models is that they can approximate human biology and therefore allow scientists to learn about and improve human health without risking harms to humans. Among the emerging ethical issues being explored is the question of at what point chimeras are “human enough” to have human rights and thus (...) be owed higher standards of research protection than that currently afforded to nonhuman animals. However, this question and other related questions assume that the ethics of experimenting on nonhuman animals have been settled, which they have not. In this essay, we argue that it is imperative to give adequate attention to familiar questions about nonhuman animal research as well as new questions about chimera research and that failure to do so will result in a distorted understanding of the ethics of chimera research. (shrink)

Consider four elite female runners who trained hard for a 1500‐meter race. Runner 1 took extra‐strength aspirin before the race. Runner 2 has a genetic condition that results in greater levels of testosterone in her body than the typical range for a woman. Runner 3 has been on a carefully scheduled regimen of the hormone erythropoietin (EPO), which has increased her red blood cell count. Runner 4 has a team of diet, sleep, and exercise experts who ensured that she (...) coordinated the exactly right balance of carbs and protein with her rest and workouts. Which of them cheated? Thomas Murray's Good Sport: Why Our Games Matter—and How Doping Undermines Them does not answer this question, but it provides tools to figure it out, and it argues that trying to answer is important. (shrink)

Should the law recognize an individual's right not to be a genetic parent when genetic parenthood does not carry with it legal or gestational parenthood? If so, should we allow individuals to waive that right in advance, either by contract or a less formal means? How should the law's treatment of gestational and legal parenthood inform these questions? Developments in reproductive technology have brought these questions to the fore, most prominently in the preembryo disposition cases a number (...) of courts have confronted - disputes over the use of stored frozen preembryos that couples have fertilized in the course of In Vitro Fertilization (IVF) - but other examples abound.In this Article, I argue that in analyzing these cases it is essential to unbundle the possible rights not to be a genetic, gestational, and legal parent, and to recognize that the three rights do not stand and fall together. I show that we cannot move from the discourse surrounding the rights not to be a gestational and legal parent to a justification for a right not to be a genetic parent. Instead, I argue that the normative mooring of the right not to be a genetic parent is best understood as a way of protecting individuals from what I call "attributional parenthood," a harm that stems from the social assignment of the status of parent to the provider of genetic material that persists notwithstanding the fact that the legal system has declared him or her a non-parent.Using this framework, I argue for the recognition of the right not to be a genetic parent. However, I reject the claim, common among courts and commentators, that this right should not be capable of advance waiver. I instead conclude that we should permit advance waiver of the right through contract, with several interventions aimed at improving contractual consent. In preembryo disposition disputes where the parties have not contracted, I argue for a general default rule of non-use, perhaps with a sub-rule permitting use when non-use would mean the impossibility of one party ever having any genetic children. (shrink)

What’s the basis for considering an egg donor a genetic parent but not a mitochondrial donor? I will argue that a closer look at the biological facts will not give us an answer to this question because the process by which one becomes a genetic parent, i.e., the process of reproduction, is not a concept that can be settled by looking. It is, rather, a concept in need of philosophical attention. The details of my argument will (...) rest on recent developments in biological technology, but the persuasiveness of my argument will turn on the history of another biological concept, death. Given some important similarities between the two concepts, the way in which ‘death’ evolved in the recent past can provide guidance on how we should think about ‘reproduction.’. (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.

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)

Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful, albeit unrealistic. However, recent scientific developments in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally.

With the recent report of a live birth after use of Mitochondrial replacement therapy, sometimes called ‘Three-parent IVF’, the clinical application of the technique is fast becoming a reality. While the United Kingdom allows the procedure under regulatory scrutiny, it remains effectively outlawed in many other countries. We argue that such prohibitions may violate individuals’ procreative rights, grounded in individuals’ interest in genetic affinity. The interest in genetic affinity was recently endorsed by Singapore’s highest court, reflecting an (...) emphasis on the importance of biological ties found across the globe. We apply that reasoning to make the case for a right to ‘Three-parent IVF’. (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)

The debate over the genetic testing of minors has developed into a major bioethical topic. Although several controversial questions remain unanswered, a degree of consensus has been reached regarding the policies on genetic testing of minors. Recently, several commentators have suggested that these policies are overly restrictive, too narrow in focus, and even in conflict with the limited empirical evidence that exists on this issue. We respond to these arguments in this paper, by first offering a clarification of (...) three key concepts—autonomy of the minor, future autonomy, and parental authority—which must be disentangled. We then respond to the arguments by noting the uncertainty of the value of predictive genetic information, and by assessing the psychosocial risks still involved in genetic testing of minors, which are also largely unknown. We conclude that the current consensus position is justified at this stage, in light of the predictions of harm resulting from genetic testing of minors that have not been adequately proved to be unwarranted. (shrink)

ABSTRACT As parents become increasingly able to make genetic trait selections on behalf of their children, they will need ethical guidance in deciding what genetic traits to select. Dena Davis has argued that parents act unethically if they make selections that constrain their child's range of futures. But some selections may expand the child's range of futures. And other selections may shift the child's range of futures, without either constraining or expanding that range. I contend that not only (...) would parents act unethically if they make selections that constrain the range of their child's futures, they would act unethically if they make selections that shift the range of their child's futures, because selections that shift the range of the child's futures would allow parents to over‐determine their child's futures. Thus, I contend that parents would act ethically only if they make selections that expand their child's range of futures. (shrink)

Until recently, genetics counselors and medical geneticists considered themselves lucky if they could provide parents with predictive information about a small number of severe genetic disorders. Testing and counseling were indicated primarily for conditions of thithis s sort. Out of respect for the autonomy of parental reproductive decision making, the prevailing ethic of genetic counseling stressed nondirectiveness and value neutrality As summarized by Arthur Caplan, the hallmarks of this stance includea willingness to provide testing and counseling to all (...) who voluntarily seek it, the presentation of information concerning findings in a manner that is balanced and comprehensible to patients or clients, the fair and balanced presentation of all options for action if a problem is discovered, a willingness to answer all questions asked by those seeking services, and an obligation to protect privacy and confidentiality at all times regardless of societal needs or benefits. (shrink)

Analytic philosophers tend to agree that intentional parental genetic shaping and intentional parental environmental shaping for the same feature are, normatively, on a par. I challenge this view by advancing a novel argument, grounded in the value of fair relationships between parents and children: Parental genetic shaping is morally objectionable because it unjustifiably exacerbates the asymmetry between parent and child with respect to the voluntariness of their entrance into the parent–child relationship. Parental genetic shaping is, (...) for this reason, different from and more objectionable than parental environmental shaping. I introduce a distinction between procreative decisions one makes qua mere procreator—that is, without the intention to rear the resulting child—and procreative decisions one makes qua procreator-and-future childrearer. Genetic shaping is objectionable when undertaken in the latter capacity: Both selection and enhancement are objectionable because they introduce an unnecessary and avoidable inequality in the parent–child relationship; in the case of enhancement, this also results in harm to the future child. (shrink)

Until recently, genetics counselors and medical geneticists considered themselves lucky if they could provide parents with predictive information about a small number of severe genetic disorders. Testing and counseling were indicated primarily for conditions of thithis s sort. Out of respect for the autonomy of parental reproductive decision making, the prevailing ethic of genetic counseling stressed nondirectiveness and value neutrality As summarized by Arthur Caplan, the hallmarks of this stance includea willingness to provide testing and counseling to all (...) who voluntarily seek it, the presentation of information concerning findings in a manner that is balanced and comprehensible to patients or clients, the fair and balanced presentation of all options for action if a problem is discovered, a willingness to answer all questions asked by those seeking services, and an obligation to protect privacy and confidentiality at all times regardless of societal needs or benefits. (shrink)

Although the philosophical literature on the ethics of human prenatal genetic alteration purports to inform us about how to act, it rarely explicitly recognizes the perspective of those who will be making the PGA decision in practice. Here I approach the ethics of PGA from a distinctly virtue-based perspective, taking seriously what it means to be a good parent making this decision for one’s child. From this perspective, I generate a sound verdict on the moral standing of human (...) PGA : given the current state of the art, good parents have compelling reason not to consent to PGA for their child, especially as part of the first wave of PGA research participants and especially for non-medically oriented purposes. This is because doing otherwise is inconsistent with a plausible and defensible understanding of virtuous parenting and parental virtues, founded on a genuine concern for promoting the overall flourishing of the eventual child. In essence, given the current and foreseeable state of the art, parents who allow prenatal genetic alteration of their children are less-than-virtuous parents to those children, even in cases where they have a right to do so and even if PGA turns out to be beneficial to the eventual child. (shrink)

Should parents aim to make their children as normal as possible to increase their chances to “fit in”? Are neurological and mental health conditions a part of children’s identity and if so, should parents aim to remove or treat these? Should they aim to instill self-control in their children? Should prospective parents take steps to insure that, of all the children they could have, they choose the ones with the best likely start in life? -/- This volume explores all of (...) these questions and more. Against the background of recent findings and expected advances in neuroscience and genetics, the extent and limits of parental responsibility are increasingly unclear. Awareness of the effects of parental choices on children’s wellbeing, as well as evolving norms about the moral status of children, have further increased expectations from (prospective) parents to take up and act on their changing responsibilities. -/- The contributors discuss conceptual issues such as the meaning and sources of moral responsibility, normality, treatment, and identity. They also explore more practical issues such as how responsibility for children is practiced in Yoruba culture in Nigeria or how parents and health professionals in Belgium perceive the dilemmas generated by prenatal diagnosis. (shrink)

The purpose of this paper is to unveil one problem that surrounds the debate over the moral standing of prenatal genetic enhancement (PGE) and to outline a solution to it. The problem is that we have no way to test our speculations about the consequences of prenatal enhancement without begging the question about the moral permissibility of enhancing unborn children. The only way to empirically support our speculations about the consequences of prenatal enhancement is to resort to ethically worrisome (...) (and radical) experimental genetic research. The suggested solution to this problem is to focus on the character of good parents. The virtue of parental wisdom is introduced and used as a basis for evaluating PGE. It is argued that good parents have good reason not to condone PGE for their children (in very many cases), especially as part of the first wave of genetically altered humans. (shrink)

This paper considers parental duties of beneficence and non-maleficence to use prenatal genetic testing for non-treatable conditions. It is proposed that this can be a duty only if the testing is essential to protect the interests of the child ie only if there is a risk of the child being born to a life worse than non-existence. It is argued here that non-existence can be rationally preferred to a severely impaired life. Uncontrollable pain and a lack of any opportunity (...) to develop a continuous self are considered to be sufficient criteria for such preference. When parents are at risk of having a child whose life would be worse than non-existence, the parents have a duty to use prenatal testing and a duty to terminate an affected pregnancy. Further, such duty does not apply to any conditions where the resulting life can be considered better than non-existence. (shrink)

Most parents want to improve the lot of their children. Providing a safe environment, a healthful diet, a good education, exposure to diverse experiences are some of the more conventional means of enhancing the health and opportunities of children. Increasingly, parents or would‐be parents are being offered genetic means for enhancing their children's lives. To whichever means parents turn, the road to enhancement is paved with some deadly and not‐so‐deadly sins that all parents and social stewards ought to learn (...) to avoid. They are calculativeness, overbearingness, shortsightedness, hasty judgment, and pessimism. (shrink)

The purpose of this paper is to unveil the incompleteness of John Harris' view that parents have a moral obligation to genetically enhance their unborn children. Specifically, here two main conclusions are proposed: (1) at present there exist insufficient empirical data for determining whether prenatal genetic enhancement (PGE) is a moral obligation on prospective parents. Although the purpose of PGE research would be to determine the extent to which PGE is safe and effective, the task of determining the veracity (...) of Harris' premises is impossible to achieve without begging the question; we would be forced to assume the moral permissibility of PGE in order to generate the data that are required for determining its moral standing. So, given this empirical blindness, consequence-based normative frameworks like that of Harris cannot determine the moral standing of PGE, but merely push the question of the moral standing of PGE back a step, without offering any plausible and morally endorsable recourse for how to answer it; (2) even if PGE research were legal, which it is not, parents nevertheless have good reason not to consent to it for their children, especially as participants in the first wave(s) of such research. (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)

We examined the association of parents’ genetic causal beliefs and parenting behaviors, hypothesizing a positive association between parents’ genetic causal beliefs and their use of psychological control. Study 1 (N = 394) was a cross-sectional survey and revealed that parents’ genetic essentialism beliefs were positively associated with their self-reported use of harsh psychological control, but only for parents who reported relatively high levels of problem behaviors in their children. Study 2 (N = 293) employed a 4-day longitudinal (...) design and revealed that parents’ genetic causal beliefs positively predicted the use of psychological control, especially on days when they perceived relatively high problem behaviors in children. Overall, the studies demonstrated that parents’ genetic causal beliefs about character positively predicted psychologically controlling and harsh responses to child problem behaviors, which may ultimately be detrimental to child development. (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)

Advances in genomic medicine have lead to debate about the potential inclusion of genetic tests for susceptibility to common complex disorders in newborn screening programmes. Empirical evidence concerning psychosocial reactions to genetic testing is a crucial component of both ethical debate and policy development, but while there has been much speculation concerning the possible psychosocial impact of screening newborns for genetic susceptibilities, there remains a paucity of data. The aim of the study reported here is to provide (...) some of this missing empirical evidence, using type 1 diabetes as an example of a common disorder with multiple significant genetic contributors to its aetiology. Semi-structured interviews were conducted with 11 parents of babies who had received increased risk results in a study that involved newborn screening for genetic susceptibility to type 1 diabetes. Interpretative phenomenological analysis was used to evaluate the data. The interview data suggest that the probabilistic nature of results of genetic susceptibility tests impacts upon all aspects of parents' psychosocial reactions, resulting in a complex and dynamic process quite different to that described in relation to current newborn screening programmes. While parents generally reported fairly minor levels of concern in response to news of their child's increased genetic risk, these worries frequently recurred, and perception of risk also varied and fluctuated over time. Both individual and contextual factors appeared to interact with the inherent uncertainty of the test result to contribute to the dynamic nature of parental reactions, and their behavioural responses. The implications of these findings for future research and for the debate concerning potential expansion of newborn screening are discussed. (shrink)

Among moral philosophers, general disapproval of genetic enhancement has in recent years given way to the view that the permissibility of a eugenic policy depends only on its particular features. Buchanan, Brock, Daniels, and Wikler have extensively defended such a view. However, while these authors go so far as to argue that there are conditions under which parents are not only permitted but also obligated to procure genetic treatments for their intended child, they stop short of arguing that (...) there are conditions under which parents are required to procure enhancements. By contrast, David Heyd argues that parents are required to procure treatments or enhancements for their future child, but only if the intervention would not alter the future child’s personal identity. In this paper I take the case for genetic enhancement a step further by arguing that there are conditions under which parents are morally required to procure genetic interventions for their intended child, regardless of whether the intervention is a treatment or an enhancement, and regardless of whether it would alter the child’s personal identity. (shrink)

The book analyses moral and legal problems of assisted reproduction providing a pluralistic approach which combines principles of procreative beneficence, procreative nonmaleficence, reproductive autonomy and rationality with the meaning and nature of the parent-child relationship as the main criterion of moral assessment.

A number of authors have objected to potential parents' use of reproductive genetic technologies on the grounds that the use of these technologies reflects a morally problematic attitude toward parenting. More specifically, proponents of this view have argued that such a choice is inconsistent with the unconditional acceptance that lies at the heart of praiseworthy parental attitudes. This paper offers a rebuttal of this view by arguing that it is possible for a parent to exhibit unconditional acceptance of (...) the child herself without accepting each of that child's traits. If this is true, the use of reproductive genetic technologies does not inherently undermine appropriate parental attitudes. Further, by working to change some of a child's specific traits, a parent may instead exemplify an aspirational aspect of praiseworthy parenting and so demonstrate appropriate parental attitudes. (shrink)

This paper discusses whether prospectiveparents ought to find out about their geneticconstitution for reproductive reasons. It isargued that ignoring genetic information can bein line with responsible parenthood or perhapseven recommendable. This is because parenthoodis essentially an unconditional project inwhich parents ought to commit themselves tonurturing any kind of child. Besides, thetraditional reasons offered for theunfortunateness of impairments and the tragicfate of families with disabled children are notconvincing. Other morally problematic outcomesof genetics, such as discrimination againstindividuals with impairments, and limiting (...) freeparental decision making, are alsoconsidered. (shrink)

“What is a poet? An unhappy person who conceals profound anguish in his heart but whose lips are so formed that as sighs and cries pass over them they sound like beautiful music.” These opening lines from Kierkegaard's Either/Or signify a tragic state of affairs because the poet brings joy to others and yet experiences no joy himself. In a similar vein, consider the child prodigy—Bobby Fischer, Shirley Temple, Mozart. Although there is no question that these children were gifted, there (...) is some debate about how happy their childhoods were. There are benefits to just “being a kid,” and it is not clear that these individuals had that opportunity. (shrink)

This article explores the possibility that there is a parental duty to use preimplantation genetic diagnosis (PGD) for the medical benefit of future children. Using one genetic disorder as a paradigmatic example, we find that such a duty can be supported in some situations on both ethical and legal grounds. Our analysis shows that an ethical case in favor of this position can be made when potential parents are aware that a possible future child is at substantial risk (...) of inheriting a serious genetic condition. We further argue that a legal case for a duty to use PGD for medical benefit can be made in situations in which potential parents have chosen to conceive through in vitro fertilization and know that any children conceived are at substantial risk of having a serious genetic condition. (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)

Imagine a genetic counselor working with a young couple pregnant with their first child. The explosion of genetic knowledge and technology in recent years is complicating this professional relationship as a host of new choices brings a few clients with atypical needs. This couple is deaf. They seek not to avoid a child with their disability but rather to assure that the child too will be deaf—a child to share their culture and perspectives on the world. If prenatal (...) diagnosis indicates that the prospective child would be hearing, they intend to terminate the pregnancy and try again. So, how should the counselor respond to this request for services? Does a traditional deference to parental autonomy in reproductive matters require that we respect such decisions by informed couples? More broadly, what are the concepts by which society will guide policy in this new and sensitive domain? (shrink)

As a mother of two sons with adrenoleukodystrophy the author of this paper writes about her experiences of genetic counselling following the diagnosis. She discusses the dilemmas, emotions and aftermath this knowledge has brought to her family and the roles she played. Personal concerns are raised about the values guiding genetic counselling which, she found, focused on the technical details without considering the ethical implications arising from the new knowledge or the emotional dilemmas of prenatal testing. Some consequences (...) of choice and the value of hope are discussed. She concludes by challenging genetic counsellors to deliver a service which not only provides technical information but is cognisant of the ethical considerations this information may foist upon a family. (shrink)

Emerging reprogenetic technologies may radically change how humans reproduce in the not-so-distant future. One foreseeable consequence of disruptive innovations in the procreative domain is an increase in the reproductive autonomy of intended parents. Regarding the prospective parental liberty of enhancing non-health–related traits of the offspring, one controversy has particularly dominated the literature. Does parents' choice of genetically enhancing the traits of their descendants compromise children's future personal autonomy? In this article, I will analyse the main arguments which posit that reprogenetic (...) enhancement could be at odds with the child's future autonomy. I will argue that these objections are ill-founded. Moreover, I will present other arguments that show that reprogenetic technologies can enhance the autonomy of future children. Autonomy enhancement is a plausible and pro tanto desirable application of emerging reprogenetic technologies. (shrink)

Background: With multiple options available today to become a parent, how does the matter of genetic relatedness factor into adolescent cancer patients’ fertility preservation decision making? This study reports on and normatively analyzes this aspect of FP decision making. Methods: A convenience sample of Israeli adolescent cancer survivors and their parents were invited to participate in individual, semi-structured interviews. Results: In discussing the importance of genetic relatedness to future children or grandchildren, participants repeatedly brought up the interrelated (...) issues of nature, normalcy, and personal identity. Regardless of preference or ambivalence for genetic relatedness, the majority of participants were aware of alternative parenting options and noted both their advantages and disadvantages. However, knowledge of alternative parenting options was not uniform. Conclusions: To ensure that adolescent patients and their parents make informed FP decisions that meet their personal goals and values, it is important for physicians to discuss alternative parenting options with them in a culturally sensitive manner. Greater credence also should be given to those who question the importance of genetic relatedness. (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)

Objectives: Although no genetic tests for violent behaviour are currently available, research is ongoing to isolate genes related to a propensity for violence. We explored the attitudes of parents and healthcare professionals toward behavioural genetic testing for violence.Design: The attitudes of healthcare professionals and the lay public about genetic testing of children were elicited for a range of conditions through interviews with healthcare professionals and focus groups with parents. All participants were informed that behavioural genetic testing (...) was the only hypothetical genetic test in our script and it was presented as the last condition.Participants: The healthcare professionals included both genetic professionals and paediatricians. Focus group participants were recruited through various community institutions in the southside of Chicago and nearby suburbs.Results: The healthcare professionals tended to medicalise behavioural genetics, and were opposed to testing unless treatment was available. They were also uniformly concerned about the potential harms of this information, including unintentional adverse effects from environmental changes. In contrast, parents wanted genetic testing for behavioural traits to be available even in the absence of proved medical treatments. Not all parents wanted to test their own children, and some parents were concerned about self-fulfilling prophecies. Some parents, however, felt the information was important for their understanding, and could be used to support environmental changes.Conclusions: While healthcare professionals medicalised behavioural genetics, parents focused on environmental causes and influences. Consequently, healthcare professionals do not want to offer testing if there is no clear treatment, while parents may want this information to shape environmental influences. (shrink)

The article proposes to further develop the ideas of the Extended Evolutionary Synthesis by including into evolutionary research an analysis of phenomena that occur above the organismal level. We demonstrate that the current Extended Synthesis is focused more on individual traits (genetically or non-genetically inherited) and less on community system traits (synergetic/organizational traits) that characterize transgenerational biological, ecological, social, and cultural systems. In this regard, we will consider various communities that are made up of interacting populations, and for which the (...) individual members can belong to the same or to different species. Examples of communities include biofilms, ant colonies, symbiotic associations resulting in holobiont formation, and human societies. The proposed model of evolution at the level of communities revises classic theorizing on the major transitions in evolution by analyzing the interplay between community/social traits and individual traits, and how this brings forth ideas of top-down regulations of bottom-up evolutionary processes (collaboration of downward and upward causation). The work demonstrates that such interplay also includes reticulate interactions and reticulate causation. In this regard, we exemplify how community systems provide various non-genetic ‘scaffoldings’, ‘constraints’, and ‘affordances’ for individual and sociocultural evolutionary development. Such research complements prevailing models that focus on the vertical transmission of heritable information, from parent to offspring, with research that instead focusses on horizontal, oblique and even reverse information transmission, going from offspring to parent. We call this reversed information transfer the ‘offspring effect’ to contrast it from the ‘parental effect’. We argue that the proposed approach to inheritance is effective for modelling cumulative and distributed developmental process and for explaining the biological origins and evolution of language. (shrink)

Like any philosophically interesting health care practice, ethical analysis of Pre-implantation Genetic Diagnosis has produced a wide range of moral positions. For example, one might contrast David King's view that warns PGD should be strictly limited and regulated because it will soon result in the expansion of a troubling "laissez-faire eugenics" with Julian Savulescu's argument for the "principle of procreative beneficence" morally requiring parents to use information attained through PGD to select the "best child". That is, these authors represent (...) two poles of a sort of moral spectrum regarding PGD. At one end, we have a deep suspicion of the technology as directly leading to... (shrink)

People who are involuntarily childless need to use assisted reproductive technologies if they want to have a genetically related child. Yet, from an ethical point of view it is unclear to what extent assistance to satisfy this specific desire should be warranted. We first show that the subjectively felt harm due to the inability to satisfy this reproductive desire does not in itself entail the normative conclusion that it has to be met. In response, we evaluate the alternative view according (...) to which the satisfaction of this desire is regarded as a way to meet one’s presumed intermediate need for parenthood. This view presupposes that parenthood is one of those general categories of experiences and activities that contribute an irreplaceable value to people’s lives, but the central difficulty is to find those characteristics that mark out parenthood as an irreplaceable constituent of a valuable life. We go on to argue, however, that even if one assumes that parenthood is such an irreplaceable constituent that makes life more valuable, this does not necessarily entail a moral duty to satisfy the desire for genetic parenthood. We conclude that there is a pro tanto obligation to help people conceive a genetically related child (if this is what they prefer), but that this can be outweighed by other moral considerations, such as safety and justice concerns. (shrink)