Passing information to relatives can be experienced as more difficult if there are no interventions known to improve the outlook for those who have inherited the condition; this applies (at least for now) in families affected by Huntington disease (HD) and other neurodegenerative disorders. One can then work with this positively rather than simply denying or attempting to minimise any influence, as a shallow non-directiveness would do. Some of his medical colleagues gained high repute from their pathological studies conducted post mortem on their patients, whom they had selected to be killed for this purpose (Müller-Hill 1988; Harper 1996). What is needed to address the ethical issues is a full engagement of the professional as a person on every level: the rational and intellectual, indeed, but also the interpersonal awareness needed to understand the perspectives of others and to recognise the subtleties of meaning that may be expressed obliquely in communication, and the creative imagination to consider likely emotional responses in different scenarios and to generate a range of possible solutions. In UK, where foetal sex selection is not permitted, professionals can become concerned when the talk or behaviour of patients in clinic suggests that the family may be motivated to choose a ‘social’ termination of pregnancy after foetal sexing performed as part of prenatal diagnosis for other reasons. However, the absence of evidence of harm is far from being evidence of the absence of harm. One particular area in which further empirical investigation and conceptual clarification would be expected to be immensely helpful is that of the disorders of sexual development and gender assignment decisions in infancy, where ‘treatment’ and even surgery may be driven by parents’ confusion and their understandable distress but where such pressures may in the long run work to the detriment of the patient (Feder and Karkazis 2008). The importance of these principles is discussed and questioned. The variants found may be sequence variants or copy number variants (CNVs). It should also be acknowledged that the natural history of some of these biochemical disorders has actually been clarified by newborn screening, which is an unbiased method of case ascertainment. For the professionals to have confidence that a patient has the capacity to consent under English law, professionals may need to weigh up this question: ‘Does this patient have a disturbance or impairment of the mind or brain and, if so, can this patient understand and retain and weigh up and communicate the information needed to make this decision?’ If the answer is ‘No’, then a decision about testing may need to be taken after discussion at a ‘best interests’ meeting. Semin Fetal Neonatal Med. Curr Sociol 56:77–98, Article Conversely, when there is a helpful intervention, the motivation to pass on information is stronger. Commun Med 11(1):69–84, Skotko BG (2009) With new prenatal testing, will babies with Down syndrome disappear? that there is a question about what one ought to do. USA.gov. Instead of experimental design for the testing of hypotheses, the frontier of research is now the development of tools for data interpretation: making sense from the data. But does this begin at conception? An empirical and ethical perspective. The notion that genomic investigation will compensate for the lack of a detailed family history in a child being adopted is not scientifically plausible and certainly not a convincing reason to override the usual considerations of medical ethics. Hinzufügen war nicht erfolgreich. 2012; Mendes et al. Soc Sci Med 72:1760–1767, White-van Mourik M (1994) Termination of a second-trimester pregnancy for fetal abnormality. This will often be a recipe for collusion between both parties to have a brief but not challenging or intense discussion, so that neither party has to dwell on it. The PHG Foundation (Hall et al. The child’s interests have been overridden by the parents’ (often misplaced) concern or by curiosity labelled as “disabling anxiety”. 2002). This concern has been labelled the expressivist objection to antenatal screening programmes for genetic disorders. The language of genetics could just as easily have promoted such mixing of populations through citing the benefits of ‘hybrid vigour’ but that perspective is not appealing to the eugenicists. Genet Med 15:45–54, Borry P, Evers-Kiebooms G, Cornel MC, Clarke A, Dierickx K, Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG) (2009) Genetic testing in asymptomatic minors: background considerations towards ESHG recommendations.
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