Professional Ambivalence: Accounts of Ethical Practice in Childhood Genetic Testing

Childhood genetic testing raises complex ethical and moral dilemmas for both families and professionals. In the family sphere, the role of communication is a key aspect in the transmission of ‘genetic responsibility’ between adults and children. In the professional sphere, genetic responsibility is an interactional accomplishment emerging from the sometimes competing views over what constitutes the ‘best interests’ of the child in relation to parental preferences on the one hand, and professional judgements on the other. In the present paper we extend our previous research into parental accounts of childhood genetic testing and explore the ethical accounts of professionals in research interviews. Interviews (n = 20) were conducted with professional practitioners involved in the genetic diagnosis and management of children and their families. We first identify four inter-related themes—juxtaposition of parental rights vis-à-vis child’s autonomy, elicitation of the child’s autonomy, avoidance of parental responsibility and recognition of professional uncertainty. Then, using Rhetorical Discourse Analysis, we examine the range of discourse devices through which ethical accounts are situationally illustrated: contrast, reported speech, constructed dialogue, character and event work. An overarching device in these ethical accounts is the use of extreme case scenarios, which reconstruct dilemmas as justifications of professional conduct. While acknowledging ambivalence, our analysis suggests that professional judgement is not a simple matter of implementing ethical principles but rather of managing the practical conditions and consequences of interactions with parents and children. We conclude that more attention is needed to understand the way professional practitioners formulate judgements about ethical practice.     

Commanding Intentions and Prize-Winning Decisions

It is widely held that any justifying reason for making a decision must also be a justifying reason for doing what one thereby decides to do. Desires to win decision prizes, such as the one that figures in Kavka’s toxin puzzle, might be thought to be exceptions to this principle, but the principle has been defended in the face of such examples. Similarly, it has been argued that a command to intend cannot give one a justifying reason to intend as commanded. Here it is argued that ordinary agents in ordinary cases can have justifying reasons for deciding that are not and will not be justifying reasons for doing what, in making those decisions, they come to intend to do. The paper concludes with some brief observations on the functions of decision-making.     

Modal Objectivity1

It is widely agreed that the intelligibility of modal metaphysics has been vindicated. Quine's arguments to the contrary supposedly confused analyticity with metaphysical necessity, and rigid with non‐rigid designators.² But even if modal metaphysics is intelligible, it could be misconceived. It could be that metaphysical necessity is not absolute necessity – the strictest real (non‐epistemic, non‐deontic) notion of necessity – and that no proposition of traditional metaphysical interest is necessary in every real sense. If there were nothing otherwise “uniquely metaphysically significant” about metaphysical necessity, then paradigmatic metaphysical necessities would be necessary in one sense of “necessary”, not necessary in another, and that would be it. The question of whether they were necessary simpliciter would be like the question of whether the Parallel Postulate is true simpliciter – understood as a pure mathematical conjecture, rather than as a hypothesis about physical spacetime. In a sense, the latter question has no objective answer. In this article, I argue that paradigmatic questions of modal metaphysics are like the Parallel Postulate question. I then discuss the deflationary ramifications of this argument. I conclude with an alternative conception of the space of possibility. According to this conception, there is no objective boundary between possibility and impossibility. Along the way, I sketch an analogy between modal metaphysics and set theory.     

How Risk is Perceived, Constructed and Interpreted by Clients in Clinical Genetics, and the Effects on Decision Making: Systematic Review

As an individual’s understanding of their genetic risk may influence risk management decisions, it is important to understand the ways in which risk is constructed and interpreted. We systematically reviewed the literature, undertaking a narrative synthesis of 59 studies presenting data on the ways in which individuals perceive, construct and interpret their risk, and the subsequent effects. While most studies assessed perceived risk quantitatively, the combined evidence suggests individuals find risk difficult to accurately quantify, with a tendency to overestimate. Rather than being a stand-alone concept, risk is something lived and experienced and the process of constructing risk is complex and influenced by many factors. While evidence of the effects of perceived risk is limited and inconsistent, there is some evidence to suggest high risk estimations may adversely affect health and lead to inappropriate uptake of medical surveillance and preventative measures by some individuals. A more focused approach to research is needed with greater exploration of the ways in which risk is constructed, along with the development of stronger theoretical models, to facilitate effective and patient-centered counseling strategies.