In this paper, I explore the meaning of bodily integrity in disfiguring breast cancer. Bodily integrity is a normative principle precisely because it does not simply refer to actual physical or functional intactness. It rather indicates what should be regarded and respected as inviolable in vulnerable and damageable bodies. I will argue that this normative inviolability or wholeness can be based upon a person's embodied experience of wholeness. This phenomenological stance differs from the liberal view that identifies respect for integrity (...) with respect for autonomy (resulting in an invalidation of bodily integrity's proper normative meaning), as well as from the view that bodily integrity is based upon ideologies of wholeness (which runs the risk of being disadvantageous to women). I propose that bodily integrity involves a process of identification between the experience of one's body as “Leib” and the experience of one's body as “Körper.” If identification fails or is not possible, one's integrity is threatened. This idea of bodily integrity can support breast cancer patients and survivors in making decisions about possible corrective interventions. To implement this idea in oncology care, empirical-phenomenological research needs to establish how breast cancer patients express their embodied self-experiences. (shrink)

The diagnosis of idiopathic short stature refers to children who are considerably shorter than average without any identified medical reason. The US Food and Drug Administration authorised marketing of recombinant human growth hormone for ISS in 2003, while the European Medicines Agency refused it in 2007. This paper examines the arguments for these decisions as detailed in selected FDA and EMA documents. It combines argumentative analysis with an approach to policy analysis called ‘What’s the problem represented to be’. It argues (...) that the FDA presents its approval as an argument for equity of access to the treatment, describing short stature as a potential disadvantage, and assuming that height normalisation is a clinically meaningful result. The EMA, instead, refuses marketing authorisation with an argument that there is an imbalance of risks and benefits, describing ISS as a healthy condition, and arguing that hGH should provide some psychosocial and/or quality of life benefits to children with ISS other than height gain. This paper then discusses how these arguments could be read through different models of disability, particularly through the medical model of disability and the relational, experiential, and cultural understandings of disability. (shrink)

In recent years, children and young people (CYP) have been increasingly included in patient and public involvement (PPI) in health research and innovation. Such initiatives intend to give a voice to CYP in such matters. Given that it is debated whether PPI in health care fosters the values of participation, public discussion and decision making put forward by deliberative democracy, this article examines three sets of challenges concerning the involvement of CYP by focusing on age biases. After describing some existing (...) initiatives, the paper critically examines why CYP are involved, how the CYP group is constituted and then investigates the moral status of CYP in biomedical settings. It shows that the rationale for involving CYP in PPI is mainly top-down and adult-centric, thereby questioning the authentic participation in decision making. It also suggests that to ensure democratic inclusion, the CYP group should be constituted by considering both age and politics. Lastly, the article indicates that, despite the increasing recognition of child-specific rights, the sociocultural norms and power dynamics in pediatrics undermine their moral status and challenge political equality. These three sets of considerations offer a preliminary theoretical contribution toward improving democratic legitimacy and representation of CYP in health research and innovation. (shrink)