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Preimplantation genetic diagnosis (PGD) raises questions about parental obligations in light of the possibility of suffering. This chapter highlights some of the complexities in discussions of suffering, prenatal testing, and genetic conditions and in debates about whether there is a duty to select the “most advantaged” child or only to assure that a child’s life exceeds some minimum threshold. Consideration of these complexities informs an examination of two policy questions: whether it is permissible to use PGD to select for disability, and whether there is a duty to use PGD to prevent the birth of a child with a “serious” genetic condition. This chapter argues that the scope of practice permitted by law should be broad enough to accommodate a range of reasonable viewpoints and the differing capacities of prospective parents.

In 2002, scientists were reported to have discovered a “genetic predisposition to violence” in the form of the MAOA gene (monoamine oxidase A). Bioethicists reflecting on the discovery recommended that parents should use preimplantation genetic diagnosis to genetically test their embryos for the dangerous gene and encouraged states to screen newborns for those children who harboured the criminal tendency. This chapter shows that scientists never in fact discovered a genetic predisposition to violence, for discussions of the 2002 study that conceive of the study in that way fundamentally mischaracterize the results about MAOA. This mischaracterization has corrupted the bioethical discussions, leading to dangerous confusion about who does and does not bear a “predisposition to violence”.

This chapter focuses on aspects of genetic counselling for those at 50 per cent risk for Huntington’s disease (HD). There are various options including not being tested. Predictive testing for HD is described together with some perspectives from patients. There are four types of results from a predictive test: normal, intermediate allele, reduced penetrance, and abnormal. The implications of these are discussed. Options regarding testing in pregnancy are discussed which include: no testing and accepting a risk, invasive tests such as chorion villus sampling or amniocentesis and preimplantation genetic diagnosis. Finally, the issue of testing someone at 25 per cent risk is discussed.

This concluding chapter first discusses three overarching trends revealed by the comparison of embryo politics in United States, United Kingdom, France, Germany from 1968–96 and 1997–2008. These are the rise and decline of a structured public debate about the moral status of the embryo and the value of biomedical research; the fading of deeper historical legacies and the rise of more recent institutional constraints as frames for policy struggles; and increasing political salience of embryo, stem cell, and cloning research amid electoral and interest group mobilization. The intersection of these related trends has shaped the evolution of research regimes in all four countries and transformed the shape of embryo politics over time. The chapter then details two controversial areas moving onto the policy agenda: preimplantation genetic diagnosis and genetic enhancement. It concludes by considering the future paths of embryo politics.

This conclusion summarizes the key arguments of the book, including the many assumptions it challenges about the history of eugenics and the history of American religious leaders in the early half of the 20th century. It is clear that American religious leaders embraced eugenics when they departed from the traditional tenets of their faith, and that they did so in an effort to find new methods of social reform to suit a time of often-bewildering social and cultural change. This chapter also ties the history of eugenics to current debates in bioethics, revealing the continuities and discontinuities in hereditarian thinking from the previous century into the present. It is argued that the peculiar history of eugenics in the United States in the early-to-mid 20th century has fundamentally shaped the way genetic technologies is discussed in the twenty-first century. An understanding of that history — particularly the history of the ethical and theological debates that occurred — is necessary as we enter a new era of genetic science.

This chapter considers ecclesiastical teaching and personal experience regarding new reproductive technologies, such as in vitro fertilization, repro-genetic options, such as preimplantation genetic diagnosis, and stem cell research ethics. The principal argument is that the ethics of medical technologies used to treat and provide remedies for infertility turns primarily on questions of moral agency, familial integrity, and medical professionalism, including safety and efficacy. The Church of Jesus Christ of Latter-day Saints (LDS) procreative imperative can make the experience of infertility a wrenching personal ordeal that necessitates re-storying personal and gender identities relative to spiritual entrustment. Repro-genetic technologies find a moral point through disease prevention but are ethically controversial when their intent is for nonmedical purposes, such as sex selection or enhanced capacities. Despite firm convictions about the sanctity of human life, LDS teaching shows surprising acceptance regarding use of embryos for stem cell research.

Expert bioethics discourse on human enhancement may be informed and grounded by the perspectives of users of so-called enhancement technologies, such as preimplantation genetic diagnosis (PGD). Rather than enhancement technologies creating a technological imperative to enhance one’s offspring, empirical research engaging the perspectives of PGD users suggests that attitudes towards moral obligation may be more limited to familial decision-making than the social and political stage. While the use of PGD has the potential to reinforce existing social hierarchies and generate new forms of social inequality, empirical research suggests that these concerns are not shared by the actual and prospective users of PGD. Thus, the expert bioethics discourse on PGD and other enhancement technologies may be out of step with the matters of importance to the users of the technologies.

This chapter examines the cultural and moral concerns arising from future regulation of assisted reproductive technology (ART) and other reproductive technologies, including the potential of ART to challenge the traditional two-parent heterosexual family and the ability of technology to allow parents to engage in prenatal screening. Four main issues are addressed: the ability of reproductive technology to allow for only one legal parent; the unavailability of reproductive technology to certain socioeconomic classes; the concern that beneficiaries of reproductive technology are playing God by altering natural reproduction; and the way reproductive technologies are intertwined with more controversial issues such as cloning and stem cell research. The chapter takes into account a variety of religious, historical, and philosophical objections with different aspects of reproductive technology, from preimplantation genetic diagnosis to the moral status of embryos and embryos as property. It also considers how domestic and foreign courts and legislatures have addressed reproductive technology issues and concludes by analyzing the power of private contracts in agreements involving sperm donation and surrogacy.

The chapter applies the principles of procreative permissibility to a wide variety of cases. It discusses the permissibility of procreating under various natural risk conditions such as genetic diseases, genetic predispositions to physical and mental illness, genetic links to disability, parental age, parental disease, parental disability, and parental (physical) incompetence. It also applies the principles of procreative permissibility to social procreative risks, such as single parenthood, poverty, and oppression; and to the use of reproductive technologies, including prenatal genetic diagnosis (PGD), sex selection, gamete donation, surrogacy, and savior siblings. In each case, the discussion considers whether it would be rational, under any reasonable conception of rational risk, to accept the risk under consideration as a condition of your own birth in exchange for the freedom to procreate under these risk conditions; and whether the procreativity is respectfully motivated.

If parents are choosing their children’s genes, there is a chance that they will all try to have healthy, long-lived, handsome, and intelligent children. While many have advertised a world of “perfect babies” as a utopia, to some critics the loss of diversity involved would be a disaster. This chapter distinguishes between different sorts of diversity, different putative beneficiaries of the existence of diversity, and different reasons for believing diversity to be valuable. Sparrow argues that the threat posed to valuable kinds of diversity by gene editing is less than critics often fear. He suggests that, where gene editing does pose a plausible threat to a valuable kind of diversity, it might be reasonable to limit the use of gene editing as long as conserving or securing diversity does not require sacrificing the welfare of any individual too much.

This chapter examines the cultural and moral concerns arising from future regulation of assisted reproductive technology (ART) and other reproductive technologies, including the potential of ART to challenge the traditional two-parent heterosexual family and the ability of technology to allow parents to engage in prenatal screening. Four main issues are addressed: the ability of reproductive technology to allow for only one legal parent; the unavailability of reproductive technology to certain socioeconomic classes; the concern that beneficiaries of reproductive technology are playing God by altering natural reproduction; and the way reproductive technologies are intertwined with more controversial issues such as cloning and stem cell research. The chapter takes into account a variety of religious, historical, and philosophical objections with different aspects of reproductive technology, from preimplantation genetic diagnosis to the moral status of embryos and embryos as property. It also considers how domestic and foreign courts and legislatures have addressed reproductive technology issues and concludes by analyzing the power of private contracts in agreements involving sperm donation and surrogacy.

When your child is first diagnosed with aniridia or WAGR syndrome, you will have several questions for your child’s ophthalmologist. To be prepared for the first appointment, the best thing to do is make a list of questions. Some questions other parents have had are listed at the end of this chapter. If you choose to, you can use these as a starting point and add more questions to the list as you think of them. At the appointment, be sure to have your list of questions to ask the doctor. Be sure to repeat what the doctor has told you to make sure you understand him or her. If you’re not sure, then ask the doctor to try to explain it in a different way so you can understand. It is your child, and you should be as informed as possible, and the only way to do that is to ask questions and to have a good relationship with your child’s ophthalmologist. Other questions parents have had that you do not necessarily need to ask an ophthalmologist will be discussed in this chapter. When a child is first diagnosed, a question asked by many parents, especially mothers, is, “Was this my fault?” No, it was not. Do not ever blame yourself for your child having aniridia or WAGR syndrome. It is a genetic disorder that you could not have done anything about, unless you do have it yourself. There is no reason for you to feel guilty or to put blame on yourself for something you had no control over. One way to help get over any of these feelings is to join Aniridia Foundation International, where you can meet many other parents and people with aniridia. From meeting and speaking with them, you can get the support you need. . On AFI’s members’ area website, I asked parents, “What questions did you have when your child was diagnosed?” One mother responded, “Mainly I wish someone had told us that he would be able to see at least a little bit and that the disastrous picture that was painted for us at the start was not actually representative of what he would turn out to be.”