In July 2018, the Nuffield Council of Bioethics released its long-awaited report on heritable genome editing. The Nuffield report was notable for finding that HGE could be morally permissible, even in cases of human enhancement. In this paper, we summarise the findings of the Nuffield Council report, critically examine the guiding principles they endorse and suggest ways in which the guiding principles could be strengthened. While we support the approach taken by the Nuffield Council, we argue that detailed consideration of (...) the moral implications of genome editing yields much stronger conclusions than they draw. Rather than being merely ‘morally permissible’, many instances of genome editing will be moral imperatives. (shrink)
Selection against embryos that are predisposed to develop disabilities is one of the less controversial uses of embryo selection technologies. Many bio-conservatives argue that while the use of ESTs to select for non-disease-related traits, such as height and eye-colour, should be banned, their use to avoid disease and disability should be permitted. Nevertheless, there remains significant opposition, particularly from the disability rights movement, to the use of ESTs to select against disability. In this article we examine whether and why the (...) state could be justified in restricting the use of ESTs to select against disability. We first outline the challenge posed by proponents of ‘liberal eugenics’. Liberal eugenicists challenge those who defend restrictions on the use of ESTs to show why the use of these technologies would create a harm of the type and magnitude required to justify coercive measures. We argue that this challenge could be met by adverting to the risk of harms to future persons that would result from a loss of certain forms of cognitive diversity. We suggest that this risk establishes a pro tanto case for restricting selection against some disabilities, including dyslexia and Asperger's syndrome. (shrink)
Non-invasive prenatal testing is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21. However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is (...) limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems. (shrink)
Here, a moral case is presented as to why sign languages such as Auslan should be made compulsory in general school curricula. Firstly, there are significant benefits that accrue to individuals from learning sign language. Secondly, sign language education is a matter of justice; the normalisation of sign language education and use would particularly benefit marginalised groups, such as those living with a communication disability. Finally, the integration of sign languages into the curricula would enable the flourishing of Deaf culture (...) and go some way to resolving the tensions that have arisen from the promotion of oralist education facilitated by technologies such as cochlear implants. There are important reasons to further pursue policy proposals regarding the prioritisation of sign language in school curricula. (shrink)
Preimplantation genetic diagnosis allows the detection of genetic abnormalities in embryos produced through in vitro fertilization. Current funding models in Australia provide governmental subsidies for couples undergoing IVF, but do not extend to PGD. There are strong reasons for publicly funding PGD that follow from the moral principles of autonomy, beneficence and justice for both parents and children. We examine the objections to our proposal, specifically concerns regarding designer babies and the harm of disabled individuals, and show why these are (...) substantially outweighed by arguments for subsidizing PGD. We argue that an acceptance of PGD is aligned with present attitudes towards procreative decision making and IVF use, and that it should therefore receive government funding. (shrink)
Advances in biotechnology mean that it may soon be possible to recreate previously extinct species. This has led to an emerging debate within bioethics about whether we ought to reintroduce extinct species into our ecosystems. In this paper, we discuss the role that biodiversity could play in this debate. Many believe that biodiversity is a good that should be protected. We argue that if biodiversity is a good, then this suggests it should also be promoted, including by reintroducing previously extinct (...) species. We begin by outlining different ways in which biodiversity could be conceptualized, and then analyze various accounts of its value. We suggest no approach justifies an asymmetry between “protecting” biodiversity by conserving species alive today, and “creating” biodiversity by introducing previously extinct species. This suggests that if we have reasons stemming from biodiversity to protect species from extinction, we will have similar reasons to reintroduce previously extinct species. We close by asking whether arguments from biodiversity speak in favor of introducing some novel species into the ecosystem. (shrink)
The scope of noninvasive prenatal testing could expand in the future to include detailed analysis of the fetal genome. This will allow for the testing for virtually any trait with a genetic...
Many controversies in bioethics turn on questions of moral status. Some moral status issues have received extensive bioethical attention, including those raised by abortion, embryo experimentation, and animal research. Beyond these established debates lie a less familiar set of moral status issues, many of which are tied to recent scientific breakthroughs. This review article surveys some key developments that raise moral status issues, including the development of in vitro brains, part-human animals, “synthetic” embryos, and artificial womb technologies. It introduces the (...) papers in this Special Issue, contextualises their contributions to the moral status literature, and highlights some enduring challenges of determining the moral status of novel types of beings. (shrink)
Heritable genome editing is officially here. ‘Lulu’ and ‘Nana’, born in China, are the first children whose genomes have been intentionally modified. A third gene edited baby may have already been born. Scientists in Russia are planning similar applications.1 We recently argued that HGE should be judged by the same ethical standards that we apply to other technologies.2 There is a moral imperative to improve the health of future generations, to reduce inequalities and improve standards of living. If we can (...) use HGE to achieve these aims, we should. We want to thank Sarah Chan, Peter Mills, Rachel Horton and Anneke Lucassen for their thoughtful criticisms of our paper. We would also like to thank the editors of the Journal of Medical Ethics for helping facilitate this detailed discussion. The moral questions posed by HGE, are complex, multifaceted and difficult. They required focused attention, which formats like this encourage. Our responses to each of the commentaries are detailed below We agree with the following points made in Horton and Lucassen’s paper ‘ The moral argument for heritable genome editing requires an inappropriately deterministic view of genetics ’.3 These are some of the reasons why we say HGE targeting polygenic diseases is likely decades away.2 The technical challenges seem daunting. But science can move quickly, and often does so in bounds. Our capacity to capture and analyse genetic data is rapidly expanding. Over the next 5 years, genomic …. (shrink)
Although rapid genomic sequencing is improving care for critically ill children with rare disease, it also raises important ethical questions that need to be explored as its use becomes more widespread. Two such questions relate to the degree of consent that should be required for RGS to proceed and whether it might ever be appropriate to override parents’ decisions not to allow RGS to be performed in their critically ill child. To explore these questions, we first examine the legal frameworks (...) on securing consent for genomic sequencing and how they apply to the specific context of RGS for critically ill children. We then use a tool from clinical ethics, the Zone of Parental Discretion, to explore two case studies and identify under which circumstances it might be appropriate for parental refusal of RGS to be overridden. We argue that RGS may be a context where, in addition to assessing the complexity of the test offered, it is ethically appropriate to consider an effect on patient outcomes when deciding the degree of consent required. We also suggest that there are some contexts where it may be ethically justified to perform RGS, even when it is actively against the wishes of the parents. More work is needed to examine exactly how ‘time-sensitive’ exceptions to current guidance on consent for genomic sequencing could be formulated and operationalised for RGS for critically ill-children. (shrink)
