The Netherlands Centre for ethics and health (CEG) is a joint venture of the Health Council of the Netherlands and the Council for Public Health and Health Care. Its main task is to identify developments in the field of health which deserve a place on the government’s ethical policy agenda.
The right not to know is underappreciated in policy-making. Despite its articulation in medical law and ethics, policy-makers too easily let other concerns override the right not to know. This observation is triggered by a recent decision of the Dutch government on embryo selection for Huntington’s disease. People possibly affected with the Huntington gene do not always want to know their genetic status themselves, which is very burdensome knowledge. For prospective parents, this creates a difficulty in having unaffected children through embryo selection without knowing their own genetic status. A solution is provided by the exclusion test: it allows embryo selection while honouring the parents’ right not to know. This article analyses the scope of the right not to know in the context of embryo selection against Huntington’s disease. It concludes that the right not to know implies that PGD against Huntington should be allowed by means of the exclusion test.
The total number of deaths studied was 11,704 of which 1517 involved continuous deep sedation. In Dutch hospitals, CDS was significantly less often provided (11%) compared with hospitals in Flanders (20%) and U.K. (17%). In U.K. home settings, CDS was more common (19%) than in Flanders (10%) or NL (8%). In NL in both settings, CDS more often involved benzodiazepines and lasted less than 24 hours. Physicians in Flanders combined CDS with a decision to provide physician-assisted death more often. Overall, men, younger patients, and patients with malignancies were more likely to receive CDS, although this was not always significant within each country. Conclusion Differences in the prevalence of continuous deep sedation appear to reflect complex legal, cultural, and organizational factors more than differences in patients’ characteristics or clinical profiles. Further
Artsen menen vaak dat patiënten met een verlaagd bewustzijn niet lijden en dat euthanasie daarom niet mogelijk is. Maar in sommige situaties mag dit wel. De KNMG heeft, op verzoek van het College van procureurs-generaal en de Inspectie voor de Gezondheidszorg, een richtlijn opgesteld over euthanasie bij een verlaagd bewustzijn. Deze richtlijn brengt geen verruiming van de wet, maar heeft tot doel artsen houvast te bieden in deze moeilijke situatie. Het College heeft aangegeven dat als artsen handelen volgens deze richtlijn, er in beginsel geen reden is voor strafrechtelijk optreden.