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
A Toronto man’s decision to end his life, simply because he felt it was time to die, has raised questions and concerns among family, friends and experts, some of whom say it could take the assisted suicide debate down a "slippery slope." John Alan Lee, a former professor of sociology at the University of Toronto, died in December. He had carefully planned his own death for months and discussed his decision with a CBC crew. "I can be satisfied," he told the CBC’s Duncan McCue when describing his life and the choice to end it. "I can say it’s been great. It’s enough."