In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (...) (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

While promoting population health has been the classic goal of public health practice and policy, in recent decades, new objectives in terms of autonomy and equality have been introduced. These different goals are analysed, and it is demonstrated how they may conflict severly in several ways, leaving serious unclarities both regarding the normative issue of what goal should be pursued by public health, what that implies in practical terms, and the descriptive issue of what goal that actually is pursued in (...) different contexts. A basic conflict of perspective is handled by integrating the ideas of public health striving for health-related autonomy and equality, resulting in a prioritarian oriented population approach to health-related autonomy. This integrated goal is demonstrated to constrain itself in several ways attractive from the point of view of the classic goal, but several serious problems remain. For this reason, a model where all of the three goals are integrated into one coherent structure where they can be assigned varying degrees of importance relative to the level of population health is described. It is argued that this model avoids the problems set out earlier, and is actually normatively preferable to the classic goal alone. It is furthermore argued that the model may be employed as a useful tool for descriptive ethics, as well as a vehicle for international harmonisation of public health policies. A number of practical implications regarding, e.g., the importance of respecting autonomy and the allocation of public health resources are noted, as are a battery of questions for further research. (shrink)

(2001). Family Physicians and the Family Covenant Model's Usefulness in Solving Genetic Testing Conflicts. The American Journal of Bioethics: Vol. 1, No. 3, pp. 28-29.

‘Ideologies of Discrimination’ considers the implications of the new genetics for understandings of personhood and for understandings of the relationship between people in groups. In particular, the essay delineates and examines the emerging notion of a ‘genetic group’ and considers the social implications of redefining families, racial groups and ethnic groups through express, and often exclusive, reference to a shared genome. One consequence of such redefinition has been the justification and elaboration of stigmatizing images of and discrimination against such groups—especially (...) those, such as Jews and African-Americans, that have long been identified with specific somatic characteristics. A few worrisome trends begin to emerge in the response of the American legal system to the notion of genetic groups. Among these is a shift in the locus of privacy and identity from the autonomous individual to the genetic group. This shift challenges long-standing Western values that depend upon the ideological centrality of autonomous individuality. (shrink)

BackgroundAlthough the “right not to know” is well established in international regulations, it has been heavily debated. Ubiquitous results from extended exome and genome analysis have challenged the right not to know. American College of Medical Genetics and Genomics Recommendations urge to inform about incidental findings that pretend to be accurate and actionable. However, ample clinical cases raise the question whether these criteria are met. Many incidental findings are of uncertain significance. The eager to feedback information appears to enter the (...) field of IFUS and thereby threaten the right not to know. This makes it imperative to investigate the arguments for and against a right not to know for IFUS.DiscussionThis article investigates how the various arguments for and against a right not to know hold for IFUS. The main investigated arguments are: hypothetical utilitarianism, the right-based argument, the feasibility argument, the value of knowledge argument, the argument from lost significance, the empirical argument, the duty to disclose argument, the avoiding harm argument; the argument from principle, from autonomy, from privacy, as well as the argument from the right to an open future. The analysis shows that both sides in the debate have exaggerated the importance of incidental findings.SummaryOpponents of a right not to know have exaggerated the importance of IFUS, while proponents have exaggerated the need to be protected from something that is not knowledge. Hence, to know or not to know is not the question. The question is whether we should be able to stay ignorant of incidental findings of uncertain significance, if we want to. The answer is yes: As long as the information is not accurate and/or actionable: ignorance is bliss. When answering questions that are not asked, we need to think twice. (shrink)

The purpose of this paper is to show that a decontextualized approach to ethical issues is not just unhelpful for the decision making process of real, situated human beings, but dangerous. This is so, because by neglecting the context in which people make moral decisions we run the risk of reinforcing or furthering injustices against already disadvantaged groups. To show this, I evaluate three moral obligations that our ability to obtain genetic information has made salient: the duty to obtain genetic (...) information about ourselves, the obligation to inform family members about genetic risks and the duty not to reproduce when we know that there is a high risk of transmitting a serious disease or defect. I will argue here that in ignoring the context in which these moral obligations are put into practice, and in particular the situation of women in our society, those who defend these moral duties might be furthering injustices against women. (shrink)

Genetic information about one individual often has medical and reproductive implications for that individual’s relatives. There is a debate about whether policy on transmitting genetic information within the family should change to reflect this shared aspect of genetic information. Even if laws on medical confidentiality remain unchanged, there still remains the question of professional practice and whether, to what extent and by what means professionals should encourage disclosure within a family. The debate so far has tended to focus on who (...) has a right to genetic information, or has a right to decline genetic information, frequently drawing on the notion of individual autonomy. There are significant divergences within this debate, and difficulties with the use of autonomy in this context have been noted. This paper draws on theoretical considerations as well as on qualitative empirical data to show that shifting from talk of autonomy to talk of integrity will greatly enrich and illuminate the issues. It becomes possible to gain deeper insights into the ethical significance of the timing and the manner of such communication, the character of recipients of knowledge, and the nuanced nature of communication and different levels of understanding within a family. (shrink)