RESUMO
Trust relations in the health services have changed from asymmetrical paternalism to symmetrical autonomy-based participation, according to a common account. The promises of personalized medicine emphasizing empowerment of the individual through active participation in managing her health, disease and well-being, is characteristic of symmetrical trust. In the influential Kantian account of autonomy, active participation in management of own health is not only an opportunity, but an obligation. Personalized medicine is made possible by the digitalization of medicine with an ensuing increased tailoring of diagnostics, treatment and prevention to the individual. The ideal is to increase wellness by minimizing the layer of interpretation and translation between relevant health information and the patient or user. Arguably, this opens for a new level of autonomy through increased participation in treatment and prevention, and by that, increased empowerment of the individual. However, the empirical realities reveal a more complicated landscape disturbed by information 'noise' and involving a number of complementary areas of expertise and technologies, hiding the source and logic of data interpretation. This has lead to calls for a return to a mild form of paternalism, allowing expertise coaching of patients and even withholding information, with patients escaping responsibility through blind or lazy trust. This is morally unacceptable, according to Kant's ideal of enlightenment, as we have a duty to take responsibility by trusting others reflexively, even as patients. Realizing the promises of personalized medicine requires a system of institutional controls of information and diagnostics, accessible for non-specialists, supported by medical expertise that can function as the accountable gate-keeper taking moral responsibility required for an active, reflexive trust.
Assuntos
Tecnologia Digital/organização & administração , Participação do Paciente/psicologia , Autonomia Pessoal , Medicina de Precisão/psicologia , Confiança , Tecnologia Digital/normas , Técnicas Genéticas , HumanosRESUMO
BACKGROUND: In the debate on conscientious objection in healthcare, proponents of conscience rights often point to the imperative to protect the health professional's moral integrity. Their opponents hold that the moral integrity argument alone can at most justify accommodation of conscientious objectors as a "moral courtesy", as the argument is insufficient to establish a general moral right to accommodation, let alone a legal right. MAIN TEXT: This text draws on political philosophy in order to argue for a legal right to accommodation. The moral integrity arguments should be supplemented by the requirement to protect minority rights in liberal democracies. Citizens have a right to live in accordance with their fundamental moral convictions, and a right to equal access to employment. However, this right should not be unconditional, as that would unduly infringe on the rights of other citizens. The right must be limited to cases where the moral basis is more fundamental in a sense that all reasonable citizens in a liberal democracy should accept, such as the constitutive role of the inviolability of human life in liberal democracies. CONCLUSION: There should be a legal, yet circumscribed, right to accommodation for conscientious objectors refusing to provide healthcare services that they reasonably consider to involve the intentional killing of a human being.
Assuntos
Recusa Consciente em Tratar-se/ética , Suicídio Assistido/ética , Aborto Induzido/ética , Diversidade Cultural , Humanos , Princípios MoraisRESUMO
Nanoparticles have multifaceted advantages in drug administration as vaccine delivery and hence hold promises for improving protection of farmed fish against diseases caused by pathogens. However, there are concerns that the benefits associated with distribution of nanoparticles may also be accompanied with risks to the environment and health. The complexity of the natural and social systems involved implies that the information acquired in quantified risk assessments may be inadequate for evidence-based decisions. One controversial strategy for dealing with this kind of uncertainty is the precautionary principle. A few years ago, an UNESCO expert group suggested a new approach for implementation of the principle. Here we compare the UNESCO principle with earlier versions and explore the advantages and disadvantages by employing the UNESCO version to the use of PLGA nanoparticles for delivery of vaccines in aquaculture. Finally, we discuss whether a combined scientific and ethical analysis that involves the concept of responsibility will enable approaches that can provide a supplement to the precautionary principle as basis for decision-making in areas of scientific uncertainty, such as the application of nanoparticles in the vaccination of farmed fish.
RESUMO
Jürgen Habermas has argued that religious views form a legitimate background for contributions to an open public debate, and that religion plays a particular role in formulating moral intuitions. Translating religious arguments into "generally accessible language" (Habermas, Eur J Philos 14(1):1-25, 2006) to enable them to play a role in political decisions is a common task for religious and non-religious citizens. The article discusses Habermas' view, questioning the particular role of religion, but accepting the significance of including such counter-voices to the predominant views. Furthermore it is pointed out that not only religious but also numerous secular views stand in need of translation to be able to bear on policy matters. Accepting Habermas' general framework, I raise the question whether experts (such as clinicians working in relevant specialised areas of care) participating in political debates on biomedical issues have a duty to state their religious worldview, and to what extent the American government decision to restrict embryo stem cell research is an illegitimate transgression of the State-Church divide.
Assuntos
Pesquisa Biomédica/ética , Pesquisas com Embriões/ética , Diagnóstico Pré-Implantação/ética , Diagnóstico Pré-Natal/ética , Opinião Pública , Bioética , Ética Médica , Humanos , Religião e MedicinaRESUMO
Public policy on the development and use of genetically modified organisms (GMOs) has mainly been concerned with defining proper strategies of risk management. However, surveys and focus group interviews show that although lay people are concerned with risks, they also emphasize that genetic modification is ethically questionable in itself. Many people feel that this technology "tampers with nature" in an unacceptable manner. This is often identified as an objection to the crossing of species borders in producing transgenic organisms. Most scientists reject these opinions as based on insufficient knowledge about biotechnology, the concept of species, and nature in general. Some recent projects of genetic modification aim to accommodate the above mentioned concerns by altering the expression of endogenous genes rather than introducing genes from other species. There can be good scientific reasons for this approach, in addition to strategic reasons related to greater public acceptability. But are there also moral reasons for choosing intragenic rather than transgenic modification? I suggest three interrelated moral reasons for giving priority to intragenic modification. First, we should respect the opinions of lay people even when their view is contrary to scientific consensus; they express an alternative world-view, not scientific ignorance. Second, staying within species borders by strengthening endogenous traits reduces the risks and scientific uncertainty. Third, we should show respect for nature as a complex system of laws and interconnections that we cannot fully control. The main moral reason for intragenic modification, in our view, is the need to respect the "otherness" of nature.