The combination of genuine ethical concerns and fear of learning to use germ-line therapy for human disease must now be confronted. Until now, no established techniques were available to perform this treatment on a human. Through an integration of several fields of science and medicine, we have developed a nine step protocol at the germ-line level for the curative treatment of a genetic disease. Our purpose in this paper is to provide the first method to apply germ-line therapy to treat (...) those not yet born, who are destined to have a life threatening, or a severely debilitating genetic disease. We hope this proposal will initiate the process of a thorough analysis from both the scientific and ethical communities. As such, this proposal can be useful for official groups studying the advantages and disadvantages of germ-line therapy. (shrink)

It is often argued that it does not matter morally whether biomedical interventions treat or prevent diseases or enhance nondisease traits; what matters is whether and how much they promote well-being. Therapy and enhancement both promote well-being, the argument goes, so they are not morally distinct but instead continuous. I provide three reasons why this argument should be rejected when it is applied to choices concerning the genetic makeup of future people. First, it rests on too simple a conception of (...) the badness of disease. Second, it wrongly assumes that disease avoidance and enhancement can proceed with similar accuracy. Third, it overlooks that disease avoidance tends to be more urgent than enhancement from the point of view of distributive justice. Although none of these reasons establishes a firm therapy-enhancement distinction, they show that a continuum model is not an attractive alternative. (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)

The case in favor of gene therapy is quite simple. Gene therapy is likely to improve the health and well-being of some people that are among the worst off in society, namely patients with painful and life-threatening diseases. However, two types of objection have been raised.

This paper examines whether there are moral differences between the mitochondrial replacement techniques that have been recently developed in order to help women afflicted by mitochondrial DNA diseases to have genetically related children absent such conditions: maternal spindle transfer and pronuclear transfer. Firstly, it examines whether there is a moral difference between MST and PNT in terms of the divide between somatic interventions and germline interventions. Secondly, it considers whether PNT and MST are morally distinct under a therapy/creation optic. Finally, (...) it investigates whether there is a moral difference between MST and PNT from a human embryo destruction point of view. I conclude, contra recent arguments, that regarding the first two points there is no moral differences between PNT and MST; and that regarding the third one MST is morally preferable to PNT, but only if we hold a gradualist account of the moral value of human embryos where zygotes have slight moral value. (shrink)

Actually possible and conceivable future uses of preimplantation genetic diagnosis (PGD) and germ-line genetic intervention in assisted reproduction seem to offer increasing possibilities of choosing the kind of persons that will be brought to existence. Many are troubled by the idea of these technologies being used for enhancement purposes. How can we make sense of this worry? Why are our thoughts about therapeutic genetic interventions and non-genetic enhancement (for instance education) not accompanied by the same intuitive uneasiness? I argue that (...) the concepts of autonomy and freedom of choice, typically invoked to delimit the morally acceptable uses of reproductive technologies, cannot fully answer these questions. Instead, I suggest that an alternative answer might begin with reflections on the notion of interfering with nature. Drawing on Martin Heidegger’s critique of modern technology and Hans Jonas’s moral philosophy, I outline an argument that attempts to capture what might be particularly troubling about the idea of “designing” future persons. At the core of the argument is the suggestion that enhancing selections and modifications on embryos might be bound up with an instrumentalising, non-responsive perspective on the future persons into which they are intended to grow. (shrink)

We have surveyed various recent European opinions on Germ-Line engineering. The majority express more or less severe reservations about any interventions on the human Germ-Line, including therapeutic ones. However, they are divided over the pragmatic, or categorical-ethical nature of the relevant arguments. This split reflects two competing views of technology. The ‘pessimistic’ one is deeply concerned by the slippery slope leading from bona fide therapeutic applications of genetic engineering to eugenic practices. It insists that, if anything can defend us against (...) these evils, it must be a set of strong, ethically-based prohibitions. The other, ‘optimist’ view is more confident in the discriminating powers of societal regulation. We argue for the latter view and suggest that the pragmatic arguments brought to this debate are less problematic than the ethical ones. (shrink)

BackgroundThis article explores the reasons in favour of revising and extending the current 14-day statutory limit to maintaining human embryos in culture. This limit is enshrined in law in over a dozen countries, including the United Kingdom. In two recently published studies, scientists have shown that embryos can be sustained in vitro for about 13 days after fertilisation. Positive reactions to these results have gone hand in hand with calls for revising the 14-day rule, which only allows embryo research until (...) the 14th day after fertilisation.Main textThe article explores the most prominent arguments in favour of and against the extension of the 14-day limit for conducting research on human embryos. It situates these arguments within the history of the 14-day limit. I start by discussing the history of the 14-day limit in the United Kingdom and the reasons behind the decision to opt for a compromise between competing moral views. I then analyse the arguments that those who are generally in favour of embryo research put forward in support of extending the 14-day rule, namely the argument of the beneficence of research and the argument of technical feasibility. I then show how these two arguments played a role in the recent approval of two novel techniques for the replacement of faulty mitochondrial DNA in the United Kingdom. Despite the popularity and widespread use of these arguments, I argue that they are ultimately problematic and should not be straightforwardly accepted. I end by making a case for respecting value pluralism in the context of embryo research, and I present two reasons in favour of respecting value pluralism: the argument of public trust and the argument of democracy.ConclusionI argue that 14-day limit for embryo research is not a valuable tool despite being a solution of compromise, but rather because of it. The importance of respecting value pluralism needs to be considered in any evaluation concerning a potential change to the 14-day rule. (shrink)

Germ-line genetic interventions, like all medicine, can present opportunities to remove suffering, save and prolong human life, and support the conditions for successful human performance. Like all medicine, these interventions also present risks that reflect fallen humans’ age-old egocentric ambition to secure their health and improve their quality of life by relying exclusively on their own power, wisdom, and technical means. Moreover, man has always been tempted to overstep Divine prohibitions and to disregard his own calling to become deified by (...) grace. Wherever man succumbs to such tendencies, this inescapably leads to a disruption of the vital relationship between man and God. The legitimacy of the intervention itself depends on the theological status of the genome. Orthodox theology recognizes that the human genome, just as everything else that is created, must be understood in terms of its relationship to God. This consideration, however, does not mean that it can be idolized or is therefore untouchable. Interventions and alterations can be accepted within the constraints set by God, as formulated in the theology of creative logoi of beings in the teaching of the Fathers of the Church, and thus in view of man’s divine vocation. The Christian acceptability or inacceptability of human germ-line gene therapy depends directly on the extent to which it accords with an Orthodox spiritual life, or else hinders such a life. In this sense, this intervention can be examined in the same way as the application of all medical knowledge. When this is used to relieve pain and is motivated by selfless love for one’s neighbor, then it can be considered God’s gift to humankind. When, however, it becomes an absolute and attempts to usurp the presence of God in human life, then use becomes abuse and modern man faces yet another form of idolatry, even though more refined than earlier forms. (shrink)

The ArgumentSome have claimed that negative genetic interventions are morally permissible while positive ones are not, but the distinction cannot be used to draw this moral boundary. Underlying the negative/positive distinction is a distinction between treatment and enhancement. The treatment/enhancement distinction at best provides an imperfect guide to which health care services we are obliged to provide and which we are not. It offers only some “warning flags” to help us think about what is permissible or not.