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Despite the frequent invocation of 'false hope' and possible related moral concerns in the context of assisted reproduction technologies, a focused ethical and conceptual problematisation of this concept seems to be lacking. We argue that an invocation of 'false hope' only makes sense if the fulfilment of a desired outcome (eg, a successful fertility treatment) is impossible, and if it is attributed from an external perspective. The evaluation incurred by this third party may foreclose a given perspective from being an object of hope. However, this evaluation is not a mere statistical calculation or observation based on probabilities but is dependent on several factors that should be acknowledgeable as morally relevant. This is important because it allows room for, and encourages, reasoned disagreement and moral negotiation. Accordingly, the object of hope itself, whether or not based on socially embedded desires or practices, can be a topic of debate.
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Principios Morales , Negociación , Humanos , Técnicas Reproductivas Asistidas , ReproducciónRESUMEN
Considering public moral attitudes is a hallmark of the anticipatory governance of emerging biotechnologies, such as heritable human genome editing. However, such anticipatory governance often overlooks that future morality is open to change and that future generations may perform different moral assessments on the very biotechnologies we are trying to govern in the present. In this article, we identify an 'anticipatory gap' that has not been sufficiently addressed in the discussion on the public governance of heritable genome editing, namely, uncertainty about the moral visions of future generations about the emerging applications that we are currently attempting to govern now. This paper motivates the relevance of this anticipatory gap, identifying the challenges it generates and offering various recommendations so that moral uncertainty does not lead to governance paralysis with regard to human germline genome editing.
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Mobile health tools are often said to empower users by providing them with the information they need to exercise control over their health. We aim to bring clarity to this claim, and in doing so explore the relationship between empowerment and autonomy. We have identified three distinct models embedded in the empowerment rhetoric: empowerment as information, empowerment as control, and empowerment as values. Each distinct model of empowerment gives rise to an associated problem. These problems, the Problem of Interpretation, the Value Alignment Problem, and the Priority Problem, show that mobile health tools in their current form are either insufficient for empowerment or are self-defeating. These digital health technologies encourage users to adopt an individualized conception of autonomy, one that may weaken the doctor-patient relationship and undermine practices in shared decision making, and ultimately may not deliver on improving the health outcomes for those that need it the most.
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Rapid advances in digital hearing technologies, also known as hearables, are expected to disrupt the direct-to-consumer health market. For older adults with higher incidence of hearing loss, such disruption could reduce hearing problems, increase accessibility to hearing aids, and mitigate related stigmas. This paper delves into the intersection of disruptive innovation and hearables within the realm of biomedical ethics. Through a comprehensive exploration, we shed light on the ethical implications surrounding hearables. By critically evaluating the key ethical advantages and drawbacks, we find that no single concern presents an insurmountable a priori objection to hearables. We conclude with some ideas to maximize the benefits of hearables and further promote opportunities for equitable hearing health.
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Due to its enormous potential, artificial intelligence (AI) can transform healthcare on a seemingly infinite scale. However, as we continue to explore the immense potential of AI, it is vital to consider the ethical concerns associated with its development and deployment. One specific concern that has been flagged in the literature is the responsibility gap (RG) due to the introduction of AI in healthcare. When the use of an AI algorithm or system results in a negative outcome for a patient(s), to whom can or should responsibility for that outcome be assigned? Although the concept of the RG was introduced in Anglo-American and European philosophy, this paper aims to broaden the debate by providing an Ubuntu-inspired perspective on the RG. Ubuntu, deeply rooted in African philosophy, calls for collective responsibility, and offers a uniquely forward-looking approach to address the alleged RG caused by AI in healthcare. An Ubuntu-inspired perspective can serve as a valuable guide and tool when addressing the alleged RG. Incorporating Ubuntu into the AI ethics discourse can contribute to a more ethical and responsible integration of AI in healthcare.
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Inteligencia Artificial , Atención a la Salud , Responsabilidad Social , Inteligencia Artificial/ética , Humanos , Atención a la Salud/ética , Algoritmos , Filosofía , ÁfricaRESUMEN
In the past decade, scientific developments in human germline genome editing (GGE) have reinvigorated questions about research ethics, responsible innovation, and what it means to do good in the field of reproductive biology and medicine. In recent years, it has become part of the ethical debate on GGE whether categorical objections about (un)naturalness, dignity, respect for the gene pool as common heritage, are and should be supplemented by more pragmatic questions about safety, utility, efficacy, and potential 'misuse', which seem to become more dominant in the moral discussion. This mini-review summarizes the morally relevant aspects of the rapidly developing domain of GGE, focusing on reproductive applications and with special attention to the ethical questions pertaining to how this technology may affect the interests of those that come to be by means of it. While vital, this encompasses more than safety considerations. Taking this perspective, it will be crucial to engage with normative questions about how GGE maps on the importance of accommodating future parents' preference to have genetically related children, and how far we should go to facilitate this. Similarly, a comprehensive ethical debate about 'appropriate application' of GGE cannot shake off the more fundamental question about how notions like 'normalcy', 'quality of life', and 'disability' can be conceptualized. This is crucial in view of respecting persons whichever traits they have and in view of acceptable boundaries to parental responsibilities.
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Edición Génica , Genoma Humano , Niño , HumanosRESUMEN
It is a dominant dictum in ethics that 'ought implies can' (OIC): if an agent morally ought to do an action, the agent must be capable of performing that action. Yet, with current technological developments, such as in direct-to-consumer genomics, big data analytics and wearable technologies, there may be reasons to reorient this ethical principle. It is our modest aim in this article to explore how the current wave of allegedly disruptive innovation calls for a renewed interest for this dictum. As an effect of prevention and prediction oriented technological innovation, an increased focus on assumedly controllable lifestyle risks may be anticipated. For lay people who might turn into patients, this may entail a reinforced behavior-based individual responsibilisation. Holding on to the OIC dictum, such responsibilisation seems to require that individuals can actually control what is framed as 'lifestyle risks' when there is not always a reliable consensus about what one should do. As such, reference to OIC may be mobilised in function of a political task of designing institutions so as to enable such choice and control.
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The centrality of trust in traditional doctor-patient relationships has been criticized as inordinately paternalistic, yet in today's discussions about medical ethics-mostly in response to disruptive innovation in healthcare-trust reappears as an asset to enable empowerment. To turn away from paternalistic trust-based doctor-patient relationships and to arrive at an empowerment-based medical model, increasing reference is made to the importance of nurturing trust in technologies that are supposed to bring that empowerment. In this article we stimulate discussion about why the move towards patient empowerment may not be able to keep clear of the criticism of trust in traditional patient-doctor relationships. First, we explore how such a shift in trust dynamics might corrode patient empowerment in the name of patient empowerment. Second, we examine how a translocation of trust may at best push the "trust issue" elsewhere and at worst make it harder to evaluate trustworthiness.
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Relaciones Médico-Paciente , Confianza , Ética Médica , Humanos , Paternalismo , Participación del PacienteRESUMEN
The implementation of care robotics in care settings is identified by some authors as a disruptive innovation, in the sense that it will upend the praxis of care. It is an open ethical question whether this alleged disruption will also have a transformative impact on established ethical concepts and principles. One prevalent worry is that the implementation of care robots will turn deception into a routine component of elderly care, at least to the extent that these robots will function as simulacra for something that they are not (i.e. human caregivers). At face value, this may indeed seem to indicate a concern for how this technology may upend existing practices and relationships within a care setting. Yet, on closer inspection, this reaction may rather point to a rediscovery and a revaluation of a particularly well-entrenched value or virtue, i.e. veracity. The virtue of veracity is one of the values that is mobilized to argue against a substitution of human caregivers (while a combination of care robots and human caregivers is much more accepted). The subject of this paper is to explore how the moral panic surrounding care robots should not so much be interpreted as an anticipated and probable disruptor in a care setting, but rather as a sensitizing - in a way conservationist - argument that identifies veracity as an established value that is supposed to be protected and advanced in present day and future care settings.
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Tecnología Disruptiva , Robótica , Humanos , Anciano , TecnologíaRESUMEN
BACKGROUND: Breakthroughs in animal studies make the topic of human application of ectogenesis for medical and non-medical purposes more relevant than ever before. While current data do not yet demonstrate a reasonable expectation of clinical benefit soon, several groups are investigating the feasibility of artificial uteri for extracorporeal human gestation. MAIN TEXT: This paper offers the first comprehensive and up to date discussion of the most important pros and cons of human ectogenesis in light of clinical application, along with an examination of crucial ethical (and legal) issues that continued research into, and the clinical translation of, ectogenesis gives rise to. The expected benefits include advancing prenatal medicine, improving neonatal intensive care, and providing a novel pathway towards biological parenthood. This comes with important future challenges. Prior to human application, important questions have to be considered concerning translational research, experimental use of human fetuses and appropriate safety testing. Key questions are identified regarding risks to ectogenesis' subjects, and the physical impact on the pregnant person when transfer from the uterus to the artificial womb is required. Critical issues concerning proportionality have to be considered, also in terms of equity of access, relative to the envisaged application of ectogenesis. The advent of ectogenesis also comes with crucial issues surrounding abortion, extended fetal viability and moral status of the fetus. CONCLUSIONS: The development of human ectogenesis will have numerous implications for clinical practice. Prior to human testing, close consideration should be given to whether (and how) ectogenesis can be introduced as a continuation of existing neonatal care, with due attention to both safety risks to the fetus and pressures on pregnant persons to undergo experimental and/or invasive procedures. Equally important is the societal debate about the acceptable applications of ectogenesis and how access to these usages should be prioritized. It should be anticipated that clinical availability of ectogenesis, possibly first as a way to save extremely premature fetuses, may spark demand for non-medical purposes, like avoiding physical and social burdens of pregnancy.
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Aborto Inducido , Ectogénesis , Femenino , Feto , Humanos , Recién Nacido , Embarazo , ÚteroRESUMEN
Many pregnant women use pregnancy related mHealth (PRmHealth) applications, encompassing a variety of pregnancy apps and wearables. These are mostly directed at supporting a healthier fetal development. In this article we argue that the increasing dominance of PRmHealth stands in want of empirical knowledge affirming its beneficence in terms of improved pregnancy outcomes. This is a crucial ethical issue, especially in the light of concerns about increasing pressures and growing responsibilities ascribed to pregnant women, which may, in turn, be reinforced by PRmHealth. A point can be made that it would be ethically askew if PRmHealth does not lead to improved pregnancy outcomes, while at the same time increasing maternal duties to closely monitor fetal development. We conclude that more research is needed to get a view on the benefits and burdens of PRmHealth in order to ethically assess whether the latter are proportionate to the former. If not, there is a case in saying that endorsement of PRmHealth is overdemanding.
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Autonomía Personal , Telemedicina , Beneficencia , Femenino , Humanos , Embarazo , Mujeres EmbarazadasRESUMEN
Germline genome editing is often disapproved of at the international policy level because of its possible threats to human dignity. However, from a critical perspective the relationship between this emerging technology and human dignity is relatively understudied. We explore the main principles that are referred to when 'human dignity' is invoked in this context; namely, the link with eugenics, the idea of a common genetic heritage, the principle of equal birth and broader equality and justice concerns. Yet the concept is also used in favour of germline genome editing as it might improve the overall well-being of future generations. We conclude that dignity concerns do not justify a complete ban on safe heritable genome editing but should inform the implementation of side constraints to ensure that the value judgements about human traits that are inherent in this practice do not result in a diminished basic respect for those people affected by them.
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Edición Génica/ética , Genoma Humano , Células Germinativas , Derechos Humanos/ética , Derechos Humanos/legislación & jurisprudencia , Personeidad , Edición Génica/legislación & jurisprudencia , HumanosRESUMEN
In this paper, we aim to stimulate ethical debate about the morally relevant connection between ectogenesis and the foetus as a potential beneficiary of treatment. Ectogenesis could facilitate foetal interventions by treating the foetus independently of the pregnant woman and provide easier access to the foetus if interventions are required. The moral relevance hereof derives from the observation that, together with other developments in genetic technology and prenatal treatment, this may catalyse the allocation of a patient status to the foetus. The topic of foetal medicine is of growing interest to clinicians, and it also deserves due attention from an ethical perspective. To the extent that these developments contribute to the allocation of a patient status to the foetus (and to its respective interests for medical treatment), normative questions arise about how moral responsibilities towards foetal interests should be balanced against the interests of the pregnant woman. We conclude that, even if ectogenesis could facilitate foetal therapy, it is important to remain sensitive to the fact that it would not circumvent the key ethical concerns that come with in utero foetal treatment and that it may even exacerbate potential conflicts between directive treatment recommendations and the pregnant woman's autonomous decision to the contrary.
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Ectogénesis/ética , Terapias Fetales/ética , Feto , Mujeres Embarazadas , Beneficencia , Femenino , Humanos , Obligaciones Morales , Autonomía Personal , Embarazo/éticaAsunto(s)
Relaciones Familiares , Humanos , Femenino , Técnicas Reproductivas Asistidas/ética , Familia , MasculinoRESUMEN
In vitro gametogenesis (IVG) is believed to be the next big breakthrough in reproductive medicine. The prima facie acceptance of this possible future technology is notable when compared to the general prohibition on human reproductive cloning. After all, if safety is the main reason for not allowing reproductive cloning, one might expect a similar conclusion for the reproductive application of IVG, since both technologies hold considerable and comparable risks. However, safety concerns may be overcome, and are presumably not the sole reason why cloning is being condemned. We therefore assess the non-safety arguments against reproductive cloning, yet most of these can also be held against IVG. The few arguments that cannot be used against IVG are defective. We conclude from this that it will be hard to defend a ban on reproductive cloning while accepting the reproductive use of IVG.
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Clonación de Organismos/ética , Gametogénesis , Ingeniería Genética/ética , Células Germinativas , Reproducción/ética , Técnicas Reproductivas Asistidas/ética , Células Madre , Niño , Clonación de Organismos/legislación & jurisprudencia , Disentimientos y Disputas , Ingeniería Genética/legislación & jurisprudencia , Humanos , Padres , Técnicas Reproductivas Asistidas/legislación & jurisprudencia , Control Social FormalRESUMEN
Research into the development of stem cell-derived (SCD) gametes in humans, otherwise known as in vitro gametogenesis (IVG), is largely motivated by reproductive aims. Especially, the goal of establishing genetic parenthood by means of SCD-gametes is considered an important aim. However, like other applications in the field of assisted reproduction, this technology evokes worries about the possibility of creating so-called 'designer babies.' In this paper, we investigate various ways in which SCD-gametes could be used to create such preference-matched offspring, and what this would mean for the acceptability of IVG, if it is premised that it is morally problematic to 'design' offspring. We argue that IVG might facilitate the creation of preference-matched offspring, but conclude that this should not undermine the moral acceptability of IVG altogether-even if one concedes the premise that creating 'designer babies' is morally problematic. In the light of this, we also point at a possible inconsistency for a position that condemns the creation of 'designer offspring,' while accepting the various endeavors to have genetically related offspring.
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Fertilización In Vitro/ética , Gametogénesis , Edición Génica/ética , Humanos , Células MadreRESUMEN
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.
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Relaciones Padres-Hijo , Padres/psicología , Linaje , Técnicas Reproductivas Asistidas , Familia/psicología , Humanos , Matrimonio/psicología , Técnicas Reproductivas Asistidas/ética , Técnicas Reproductivas Asistidas/psicologíaAsunto(s)
Algoritmos , Autonomía Personal , Humanos , Paternalismo , Toma de Decisiones , Relaciones Médico-PacienteRESUMEN
It has been suggested that future application of stem-cell derived gametes (SCD-gametes) might lead to the possibility for same-sex couples to have genetically related children. Still, for this to become possible, the technique of gamete derivation and techniques of reprogramming somatic cells to a pluripotent state (directly or via somatic cell nuclear transfer) would have to be perfected. Moreover, egg cells would have to be derived from male cells and sperm cells from female cells, which is believed to be particularly difficult, if not impossible. We suggest a more plausible scenario to provide same-sex couples with the possibility to parent a child who is genetically related to both parents. Although technical feasibility is an advantage (also in terms of safety), disadvantages are that cooperation of a donor of the opposite sex is still required and that the partners are genetically linked to the resulting child in a different degree. However, since in our scenario the donor's genetic contribution would not outweigh any of the parents' genetic contribution, this alternative route may ease the fear for a possible parental claim by the donor. Like many other applications in the field of infertility treatment, the goal to create SCD-gametes for reproductive purposes is largely based on the high value attributed to genetic parenthood. Although we believe that genetic relatedness is neither a necessary nor a sufficient condition for 'good' parenthood, we do believe that many people may consider our scenario a welcome alternative.