Ainsley Newson

This study explores parents’ perspectives on expanded genomic testing in pregnancy and its implications for reproductive autonomy. We conducted four workshops using dialogue group methodology and involving thirty-three Australian parents with recent experience of pregnancy. Participants used a fictional scenario involving prenatal testing to reflect on their own experiences and views. Four interconnected themes were identified: barriers to autonomous testing and choice, the need for guidance and support through the decision-making process, the impact of stress and social expectations on reproductive autonomy, and the importance of information to reproductive autonomy. Participants valued genomic information to help in decision-making and to give reassurance but struggled to comprehend the nature of the information that expanded testing could provide. They relied on trusted healthcare professionals to interpret the meaning of test results but recognized the reality of constraints on healthcare resources. Our findings show that reproductive autonomy in this context is both individual and relational and requires health systems that support values-based decision-making. In an era of expanding prenatal genomic testing, our study highlights the need for a framework for reproductive autonomy that goes beyond information provision, to provide the conditions necessary for genuinely autonomous decision-making.

Precision medicine (PM) is an approach to research and healthcare delivery driven by insights from linked genomic, epigenetic, clinical, behavioural, and environmental data. Data sharing for PM, especially between parties with divergent strategic and commercial interests, requires balancing competing values, creating a trusted data ecosystem, and maintaining social license. This paper integrates findings from normative bioethics and empirical research in Singapore to discern recommendations for guidance on the ethical governance of genomic and health data. We distil findings from mixed methods research in Singapore and map these onto Kalkman et al.’s themes and principles for data sharing. Based on our normative and empirical analyses, we argue that the values of public benefit, fairness, accountability, and transparency are critical for maintaining social license for PM in Singapore. Consent is important but insufficient to secure public trust or support for data sharing if these other normative values are not achieved. Contrary to assertions in much of the existing bioethics literature on genomic and health data sharing, we found that different consent options (such as specific versus broad consent) had little impact on social license for data sharing. Our analysis provides empirically grounded, contextually appropriate, responsive normative guidance for trustworthy data governance in Singapore. While our findings are specific to Singapore's cultural and institutional context, our methodological approach and the relative de-emphasis of individual consent models offer important insights for other jurisdictions developing PM programs, particularly in non-Western settings where collective values may take precedence over individual autonomy.

Health Technology Assessment (HTA) has traditionally focused on efficacy, safety, and cost-effectiveness. There has long been concern, however, that this is determined by the goals of healthcare providers/payers, not patients. As a result, HTA arguably fails to reflect the overall value of health technologies—including their “non-clinical” or “personal” utility to patients and their families. The use of genomic testing in clinical care is one domain where this problem is evident, as the personal utility of results is often especially significant. As such, there are growing calls for HTA frameworks to adopt personal utility as a distinct element of value when assessing clinical genomic tests. We agree that personal utility is important to HTA in clinical genomics. However, against a trend toward comprehensive conceptions of personal utility within HTA, we advocate for a restrictive approach to assessing the value of personal utility in the case of clinical genomic testing.

Human genomics involves generating, processing, storing, using and sharing immense amounts of information. This will only increase given efforts to embed whole genome sequencing into mainstream clinical practice. However, as society becomes more conscious about the impact of human activity on the environment, it is imperative to consider what this means for the future of genomic data generation and its governance. There is scant literature on environmental ethics in the context of genomic data governance. To address this gap, we drew on existing debates and scholarship relating to the environmental impact of biobanking, healthcare generally, and data-intensive healthcare specifically, to construct the strongest conceptual challenges to the proposal that environmental concerns should be incorporated into genomic data governance frameworks. Each challenge was critically examined. We developed five conceptual obstacles to incorporating environmental considerations in genomic data governance: genomic data optimism; the outcome measurement challenge; the responsibility challenge; the worse offender challenge; and technological idealism. We argue that no objection, when considered individually or together, provides strong enough reasons to ignore or de-prioritise environmental considerations in genomic data governance. We suggest three proposals to move forward with environmental ethics in genomic data governance: research ethics committees should pilot how to consider environmental ethics when assessing and approving genomic research; environmental considerations should be explicitly considered in all prospective genomic data generation; the sector should catalogue low-value practices that can be easily discontinued with minimal disruption. As a rapidly growing field, the environmental harm from genomic data generation is certain and significant. The relevant question, then, is not whether but how to mitigate the harms without compromising genomics’ potential benefits.

The expansion of newborn bloodspot screening (NBS) programs through genomic sequencing is proposed as a way to revolutionise infant and lifelong healthcare. But for all its promise, profound ethical challenges arise too. Robust analysis of these ethical challenges, which include technological and commercial imperatives, as well as balancing individual rights with communal goods, first necessitates clarity as to which ethical approach is best suited to considering the use of genomics in NBS. We use normative ethical analysis to provide a critical comparison of three ethical approaches to the expansion of NBS that shape debates over the implementation of genomic newborn screening (gNBS): liberal individualism, public health ethics, and genomic healthcare as a human right. While these approaches often overlap in practice, their distinct priorities illuminate tensions between individual autonomy, collective welfare, and rights-based claims to genomic information and attendant healthcare. We argue that public health ethics should be the primary ethical approach for gNBS. Yet, none of the three approaches are individually sufficient to fully address the ethical complexities involved. This is because each approach sheds useful light on distinct benefits and limitations of gNBS. While rigorous evidence-gathering to inform the ethical and societal impacts of gNBS is critical, this must be accompanied by – and interpreted through – normative ethical analysis that clearly articulates the values and tensions at stake. Overall, ethical implementation of gNBS requires a policy approach that (i) adopts public health ethics for programme design, (ii) operationalises select human-rights claims in accordance with established screening principles, and (iii) embeds liberal protections against state or parental overreach.

Mitochondrial donation (MD) is a reproductive technique that aims to allow individuals at-risk of having a child with mitochondrial DNA disease avoid this outcome. Research to inform possible clinical use of MD is underway in Australia and births following the use of this technique have been announced in the United Kingdom. However, how the availability of MD will be funded in the mid- to long-term remains uncertain. One factor impacting funding decisions is public sentiment, yet there is scant evidence globally regarding attitudes toward MD funding. We sought to discern attitudes of informed members of the Australian public to how the provision of MD should be funded. We held three community juries to gauge public views on how MD should be funded. A community jury involves providing a diverse group of citizens with expert testimony and facilitating deliberation to arrive at a position. Forty-two jurors participated across three juries. All juries voted by majority to support public funding for MD. Each jury made slightly different funding choices: one preferred full public funding, another preferred co-payment, while the third was divided among full public funding, co-payment, and no public funding. Reasons in favour of public funding comprised value for money, equity (i.e., the fair and just distribution of MD) and promoting innovation. Reasons against were opportunity cost, that MD wasn’t necessary, and ethical objections to MD. Jurors also devised conditions for future funding: external review, capped services, better funding for alternative interventions and means testing. Should the current Australian MD research trial enable clinical provision, assuming that our participants’ views are consistent with those of most Australians when informed of the trade-offs, benefits and costs, then it is likely that there will be strong public support for governments to fund access. However, some people may object to this expenditure.

Genomic-based testing in reproduction is expanding, with more tests offered to more people for more indications. These tests are offered in the name of reproductive autonomy. However, ‘reproductive autonomy’ is often interpreted to over-emphasize maximal choice and information, overlooking the role of relationships and structural influences. In this paper, we consider how reproductive autonomy can be conceptualized to be useful for challenges presented by expanded prenatal genomics. After critically examining the epistemological assumptions connecting (genomic) information and autonomy, as well as the ideological pressures these tests potentially intensify, we present and defend a more fitting approach to reproductive autonomy. Our account is characterized by relationality, substantivism, the fulfillment of certain institutional conditions, and the provision of adequate options. By providing deeper philosophical context to the way we understand reproductive autonomy in expanded prenatal genomic testing, our approach nuances how the offer and uptake of prenatal genomic testing should progress.

BackgroundAs with other countries, Australia is seeking to make efficient use of genomic data for use in research, clinical medicine and population health. However, to enable cross jurisdictional consistency in the management of and access to data, it will first need to establish a national framework for governing genomic data. To this end, ethical, legal and social issues are often discussed. However, the literature offers little evidence-based support for such a framework.MethodsTo address this literature gap, we systematically reviewed two databases (Scopus and PubMed) for research articles that discussed issues and opportunities for enacting genomic data governance frameworks in the domains of research, genomic medicine and public (population) health in the Australian context.ResultsThirty-one relevant articles were included and were analysed using inductive content analysis. Our findings identified that opportunities for implementing a national genomic data governance framework concerned defining roles for patients in data governance, data management processes and increasing the public acceptance of genomic data use in healthcare and research. Additionally, they highlight differences in the opportunities and priorities for clinical and research genomics that hinder further advancement of data governance.ConclusionsOur synthesis of the current literature on genomic data governance suggests that the current focus on individual consent as the primary mechanism for protecting data subjects and different priorities in clinical and research governance need to be addressed. Given the significance of the role of consent procedures and differences in clinical and research data in generating a data governance framework, our findings hence reveal a critical gap in the research literature. Advancing a national genomic data governance framework will require greater consensus and clarity regarding the application of ethical principles across jurisdictions and institutions.

Although the concept of intelligence is difficult to define, research has provided evidence for a significant genetic component. Attempts are now being made to use molecular genetic approaches to identify genes contributing to intelligence, and to determine the ways in which they interact with environmental variables. This research is then likely to determine the developmental pathways of intelligence, in an effort to understand mental handicap and learning disorders and develop new treatment strategies. This paper reviews research on the genetic basis of intelligence, and discusses the ethical concerns, including the role of genetic information, the value we place on intelligence and the allocation of resources. It will be argued that the objections raised are problematic, and that because of the value of this knowledge and the prospect of improving lives, this research is morally required. We will then provide a brief analysis of the issues raised by enhancement of intelligence using genetic technology, and will argue that there is no intrinsic difference between this and other means of optimising intelligence.

Health Technology Assessment (HTA) has traditionally focused on efficacy, safety, and cost-effectiveness. There has long been concern, however, that this is determined by the goals of healthcare providers/payers, not patients. As a result, HTA arguably fails to reflect the overall value of health technologies—including their “non-clinical” or “personal” utility to patients and their families. The use of genomic testing in clinical care is one domain where this problem is evident, as the personal utility of results is often especially significant. As such, there are growing calls for HTA frameworks to adopt personal utility as a distinct element of value when assessing clinical genomic tests. We agree that personal utility is important to HTA in clinical genomics. However, against a trend toward comprehensive conceptions of personal utility within HTA, we advocate for a restrictive approach to assessing the value of personal utility in the case of clinical genomic testing.

Genomic testing in prenatal care is rapidly advancing and it is now possible to obtain an entire fetal genome via a blood test administered in early pregnancy. In the pursuit of reproductive autonomy, more tests are being offered to more people, for an ever-increasing range of indications. Health professionals who provide pregnancy care are at the vanguard of prenatal testing, yet their views on the impact of technology advancements remain under-explored. Qualitative interviews with Australian healthcare professionals revealed that they value prenatal testing for its information-giving potential. However, the rationale underpinning testing reveals a tension between professionals’ desire for certainty and patients’ expectation that they will be reassured. Coupled with the greater salience of genomic information over other forms of knowledge in prenatal care, we suggest that the unchecked pursuit of information by way of genomic technologies in prenatal testing may paradoxically constrain reproductive autonomy in practice.

Medicine has always existed in a marketplace, and there have been extensive discussions about the ethical implications of commerce in health care. For the most part, this discussion has focused on health professionals’ interactions with pharmaceutical and other health technology industries, with less attention given to other types of commercial influences, such as corporatized health services and fee-for-service practice. This is a significant lacuna because in many jurisdictions, some or all of healthcare is delivered in the private sector. Using the exemplar of Assisted Reproductive Technologies (ART), this paper asks: what, if any, responsibilities do doctors have to challenge the distorting influence of commerce in healthcare, other than those arising from their own interactions with health technology companies? ART provides a good focus for this question because it is an area of practice that has historically been provided in the private sector. First, we describe a range of concepts that offer helpful heuristics for capturing how and when doctors can reasonably be said to have responsibilities to resist commercial distortion, including: complicity, acquiescence, wilful ignorance, non-wilful ignorance, and duplicity. Second, we present ways that individual doctors can act to stop questionable behaviour on the part of their colleagues, clinics/corporations, and their profession. Third, we note that there are many situations where change cannot be achieved by individuals acting alone, and so we consider the responsibilities of health professionals as collectives as well as the role that professional bodies and regulators should play.

Sahan et al draw much needed attention to the ethical complexity encountered by clinical laboratory scientists. They point out that, on the one hand, clinical laboratories are increasingly required to analyse ‘much broader swathes’ of genomic information than had previously been the case and to consider how best to report—or not report—the results that arise. On the other hand, they also note how clinical laboratory services are supporting genomic testing that is transitioning from specialist to mainstream services, such that questions of whether and how to report genomic information must ‘accommodate the considerations of an expanded multidisciplinary team (MDT)’.1 These two factors, among others, increase both the ‘range and complexity’ of ethical dilemmas faced by clinical laboratory scientists. This trajectory will continue in line with trends towards further mainstreaming of genomic medicine, and the use of genomic sequencing (generating ‘much broader swathes’ of information) over more targeted approaches. In this challenging environment, Sahan et al contend that the notion of ‘ethical preparedness’ (EP) has a crucial role to play. Here ‘EP’ is understood as a state of both systems and individuals that is characterised by the ‘capability, opportunity and motivation to respond to the ethical issues arising in a particular clinical situation, as well as being able to anticipate ethical concerns in advance in areas where practice is rapidly evolving’.1 Notably, cultivating the …

This chapter provides a comprehensive overview of the ethical issues associated with population screening from the perspective of public health. Key principles and frameworks for ethical analysis are explained and discussed, including assessment of individual and collective interests in public health. Ethical dimensions of population screening are examined with close attention to complex overlapping ethical tensions. Section one briefly describes what is meant by ‘screening’ and reviews criteria for introducing screening programmes, section two presents examples of programmes and section three presents and critiques ethical issues arising from screening.

The results of tests carried out using next-generation genomic sequencing (NGS) possess a peculiar and perhaps unique ‘diagnostic durability’. Unlike most other forms of testing, if genomic results or data are stored over time, then it remains possible to interrogate that information indefinitely, without having to retest the patient. Another peculiar property of genomic results is that their interpretations are subject to change within relatively short time frames. For instance, a genomic variant that is of uncertain significance (VUS) at the time of testing may shortly afterwards come to be understood as pathogenic (P) or benign (B). Moreover, variant classifications might be downgraded from likely pathogenic to VUS or B, or regraded from B to VUS. These two properties of genomic testing have important implications for the responsible implementation of genomic testing in healthcare. One of these is that they prompt the question whether diagnostic laboratories are morally required to routinely reinterpret their genomic variant classifications and reissue patient reports in the case of materially relevant changes. We take up this question in our paper, in which we argue against the existence of any general duty to reinterpret genomic variant classifications (as had been argued for by Appelbaum et al 1). Still, we maintain that a restricted duty to reinterpret ought to be recognised.2 We thank the authors of the commentaries on our paper for their attention to our argument and for their thoughtful responses to (and expansions of) our position. Oerlemans et al address …

Innovation is a key driver of care provision in assisted reproductive technologies (ART). ART providers offer a range of add‐on interventions, aiming to augment standard in vitro fertilization protocols and improve the chances of a live birth. Particularly in the context of commercial provision, an ever‐increasing array of add‐ons are marketed to ART patients, even when evidence to support them is equivocal. A defining feature of ART is hope—hope that a cycle will lead to a baby or that another test or intervention will make a difference. Yet such hope also leaves ART patients vulnerable in a variety of ways. This article argues that previous attempts to safeguard ART patients have neglected how the use of add‐ons in commercial ART can exploit patients’ hopes. Commercial providers of ART should provide add‐ons only free of charge, under a suitable research protocol.

Evidence suggests that one reason doctors provide certain interventions in assisted reproductive technologies (ART) is because of patient demand. This is particularly the case when it comes to unproven interventions such as ‘add‐ons’ to in vitro fertilisation (IVF) cycles, or providing IVF cycles that are highly unlikely to succeed. Doctors tend to accede to demands for such interventions because patients are willing to do and pay ‘whatever it takes’ to have a baby. However, there is uncertainty as to what moral weight should be placed on patient‐led demands in ART, including whether it is acceptable for such demands to be invoked as a justification for intervention. We address this issue in this paper. We start by elucidating what we mean by ‘patient‐led demand’ and synthesise some of the evidence for this phenomenon. We then argue that a doctor's professional role morality (PRM) yields special responsibilities, particularly in commercialised healthcare settings such as ART, because of the nature of professions as social institutions that are distinct from markets. We argue on this basis that, while there may be reasons (consistent with PRM) for doctors to accede to patient demand, this is not always the case. There is often a gap in justification between acceding to patient‐led demands and providing contested interventions, particularly in commercial settings. As a result, acceding to demand in such settings needs a strong justification to be consistent with PRM.

The classification of techniques used in mitochondrial donation, including their role as purported germ-line gene therapies, is far from clear. These techniques exhibit characteristics typical of a variety of classifications that have been used in both scientific and bioethics scholarship. This raises two connected questions, which we address in this paper: how should we classify mitochondrial donation techniques?; and what ethical implications surround such a classification? First, we outline how methods of genetic intervention, such as germ-line gene therapy, are typically defined or classified. We then consider whether techniques of mitochondrial donation fit into these, whether they might do so with some refinement of these categories, or whether they require some other approach to classification. To answer the second question, we discuss the relationship between classification and several key ethical issues arising from mitochondrial donation. We conclude that the properties characteristic of mitochondrial inheritance mean that most mitochondrial donation techniques belong to a new sub-class of genetic modification, which we call ‘conditionally inheritable genomic modification’.

Implementing whole genome sequencing (WGS) in paediatric settings demands sensitive and nuanced examination. Critical reflection as to how and when to use this technology is particularly important. This commentary on Anderson et al's (2017) evaluation of the Genome Clinic study, which involved paediatric clinical WGS, provides an opportunity for such reflection. I scrutinise three issues raised in the study: (1) the non-separation of the choice over agreeing to diagnostic WGS and whether to receive adult-onset SVs; (2) the value of deliberation regarding paediatric WGS and (3) the place of best interests in debates over returning adult-onset SVs.

This open peer commentary examines whether ethical theory is necessary for effective clinical ethics consultation. While acknowledging that knowledge of ethical theories can be helpful, it argues that high-quality critical engagement - rather than theoretical knowledge - is fundamental for good clinical ethics consultation. Drawing parallels with healthcare ethics education, the commentary suggests that critical analysis and reasoning skills can achieve key consultation functions while avoiding pitfalls like superficial application of theory or disconnection from moral intuitions.

This is the tenth of a series of case studies provided and discussed by UK clinical ethics committees. This paper summarises discussion of a case presented by the Gloucestershire Hospitals NHS Foundation Trust Clinical Ethics Committee. The case concerns a 67-year old woman who presents at the emergency department with chest pain. Her daughter films a resuscitation attempt on her mobile phone. The acceptability of a relative recording a patient's treatment is the focus of this case study. The committee's discussion and recommendations involve consideration of the interests of the patient, family, and staff, as well as issues of patient autonomy, privacy concerns, and staff well-being.

Reproductive genetic carrier screening (RCS), when offered to anyone regardless of their family history or ancestry, has been subject to the critique that it is a form of eugenics. Eugenics describes a range of practices that seek to use the science of heredity to improve the genetic composition of a population group. The term is associated with a range of unethical programmes that were taken up in various countries during the 20th century. Contemporary practice in medical genetics has, understandably, distanced itself from such programmes. However, as RCS becomes more widespread, gains public funding and uses expanded gene panels, there are concerns that such programmes could be perceived as eugenic either in intent or outcome. The typical response to the eugenics critique of RCS is to emphasise the voluntary nature of both participating in screening and making subsequent reproductive choices. While safeguarding individuals’ freedom to choose in relation to screening is essential, we consider this response inadequate. By examining the specific ethical wrongs committed by eugenics in the past, we argue that to avoid the perception of RCS being a form of eugenics it is essential to attend to the broader normative context in which reproductive decisions occur. Furthermore, ethical RCS programmes must recognise and respond to their potential to shift societal norms that shape individual reproductive choices.

In healthcare broadly, and especially in genetic (and now genomic) medicine, there is an ongoing debate about whether patients have a right not to know (RNTK) information about their own health. The extensive literature on this topic is characterised by a range of different understandings of what it means to have a RNTK,1–9 and how this purported right relates to patient autonomy. Ben Davies considers whether obligations not to place avoidable burdens on a publicly funded healthcare system might form the basis for an obligation to acquire relevant health information, and hence refute the RNTK. He also makes the interesting argument that an obligation to know does not necessarily limit the RNTK. Davies summarises the more prominent arguments against the RNTK, including harm-to-others arguments that focus on potential harms to individuals related to the patient. However he then considers the RNTK in the context of the obligations that people have to each other within a publicly funded healthcare system. So rather than focusing on harms to specific individuals, Davies’ argument is instead based on the wrong of needlessly consuming public healthcare resources. If a person avoids health-related information and thereby exacerbates their health problems, this makes them more complex and expensive to treat. Davies argues that this constitutes …

The concept of autonomy plays a central role in bioethics,1 but there is no consensus as to how we should understand it beyond a general notion of self-determination. The conception of autonomy deployed in applied ethics2 can have crucial ramifications when it is applied in real-world scenarios, so it is important to be clear. However, this clarity is often lacking when autonomy is discussed in the bioethics literature. In this paper we outline three different conceptions of autonomy, and argue that a substantive, perfectionist approach meets the theoretical requirements for an account of autonomy and also provides practical guidance. As Rebecca Walker argues, bioethics requires a more conceptually adequate account...

Reproductive genetic carrier screening (RCS) is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention-focused public health ethics approach to such screening programs. Rejecting the prevention paradigm in this context has led to an emphasis on more individually-focused values of freedom of choice and fostering reproductive autonomy in RCS. We argue, however, that population-wide RCS has sufficient features in common with other public health screening programs that it becomes important also to attend to its public health implications. Not doing so constitutes a failure to address the social conditions that significantly affect people’s capacity to exercise their reproductive autonomy. We discuss how a public health ethics approach to RCS is broader in focus than prevention. We also show that additional values inherent to ethical public health—such as equity and solidarity—are essential to underpin and inform the aims and implementation of reproductive carrier screening programs.

Non-invasive prenatal testing is an emerging form of prenatal genetic testing that provides information about the genetic constitution of a foetus without the risk of pregnancy loss as a direct result of the test procedure. As with other prenatal tests, information from NIPT can help to make a decision about termination of pregnancy, plan contingencies for birth or prepare parents to raise a child with a genetic condition. NIPT can also be used by women and couples to test purely ‘for information’. Here, no particular action is envisaged following the test; it is motivated entirely by an interest in the result. The fact that NIPT can be performed without posing a risk to the pregnancy could give rise to an increase in such requests. In this paper, we examine the ethical aspects of using NIPT ‘purely for information’, including the competing interests of the prospective parents and the future child, and the acceptability of testing for ‘frivolous’ reasons. Drawing on several clinical scenarios, we claim that arguments about testing children for genetic conditions are relevant to this debate. In addition, we raise ethical concerns over the potential for objectification of the child. We conclude that, in most cases, using NIPT to test for adult-onset conditions, carrier status or non-serious traits presenting in childhood would be unacceptable.

Empirical evidence suggests that some health professionals believe consent procedures for the emerging technology of non-invasive prenatal diagnosis (NIPD) should become less rigorous than those currently used for invasive prenatal testing. In this paper, we consider the importance of informed consent and informed choice procedures for protecting autonomy in those prenatal tests which will give rise to a definitive result. We consider whether there is anything special about NIPD that could sanction a change to consent procedures for prenatal diagnosis or otherwise render informed decision-making less important. We accept the claim that the absence of risk of miscarriage to some extent lessens the gravity of the decision to test compared with invasive methods of testing. However, we also claim that the definitive nature of the information received, and the fact that the information can lead to decisions of great significance, makes NIPD an important choice. This choice should only be made by means of a rigorous and appropriately supported decision-making process (assuming that this is what the pregnant woman wants). We conclude that, on balance, consent procedures for NIPD should mirror those for invasive testing, albeit without the need to emphasise procedure-related risk.

With over 10 000 bases of DNA being sequenced around the world per minute, it is vital that ethical discussion continues to keep pace with genetic research. This contribution by four top theorists in bioethics carefully considers the implications of the many ways genetic information will influence human health and reproduction, by considering “the most basic moral principles that would guide public policy and individual choice concerning the use of genetic interventions in a just and humane society” (4–5). Proceeding with the themes of rights, justice, and harm, problems addressed by the authors include: the significance of the moral difference between treating genetic disease and altering personality characteristics; whether the utilisation of prenatal interventions to avoid disability discriminates against the disabled, and who should have control …