The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole-genome sequencing and micro-array based analysis enable genome-wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre-test information and achieving autonomous decision-making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) the International Association of Bioethics, these challenges were presented for three different areas in which these so-called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set-up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set-up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct-to-consumer applications of the new genetics. (shrink)

The debate on the ‘right to know’ has simmered on for over 30 years. New examples where a right to be informed is contrasted to a right to be kept in ignorance occasionally surface and spark disagreement on the extent to which patients and research subjects have a right to be self-determining concerning the health related information they receive. Up until now, however, this debate has been unsatisfactory with regard to the question what type of rights—if any—are in play here (...) and to what extent they can provide a normative basis for informed consent. This paper provides an analysis of informed consent in the context of ‘epistemic interventions’: interventions which involve the communication of information. First, I offer an analysis of the concept of a ‘right not to know’ in the context of consent to epistemic interventions. I argue that the scope of the consent is determined by the extent to which this intervention can be seen as an infringement of the private sphere. After that I show how this analysis affects the scope and standards of informed consent. (shrink)

Volume 20, Issue 4, May 2020, Page 89-91.

In their article, Dees and Kwon (2013) describe the case of newborn screening for Krabbe disease and argue compellingly that a mandatory newborn screening program for this disease is problematic in several respects. Therefore, they submit, testing on Krabbe disease should only be offered on a voluntary basis, under a research protocol. In my opinion, Dees and Kwon are correct to point out the problematic character of a mandatory screening program for Krabbe disease. Their move toward a research paradigm is (...) however problematic. More specific, their proposal presents problems for the role of informed consent in Krabbe testing. (shrink)

This article explores ethical aspects of using open argumentation in person-centered care, where health professionals openly criticize or contradict factual claims, assumptions, preferences, or value commitments of patients. We argue that suchdisputingmay be claimed to have an important place in advanced versions of PCC, but that it actualizes important clinical ethical aspects of doing such disputation well. This may prompt caution in the implementation of PCC, but also inspire educational and organizational reform. We also probe the notion of openly disputing (...) with patients when PCC is applied in less standard settings, using the cases of children, psychiatry, and public health interventions, such as antibiotic stewardship programs, as examples. These contexts offer new reasons for why PCC may or should include open disputing with patients, but also introduce new ethical complications. Some of these may transform either to arguments against PCC implementation in these areas, or to a more open view of the extent a HP may seek to dominate patients in a PCC setting. We are especially skeptical of the meaningfulness of applying advanced PCC in areas of psychiatry with high levels of compulsory elements, such as forensic psychiatric detention. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 26-27, October 2012.