Telling the truth - Veracity and the language of consent

Jeantine Lunshof
VU University Medical Center, Community Genetics, EMGO Institute and Metamedica, P.O. Box 7057 - 1007 MB Amsterdam, Netherlands

The dynamics of current developments in genomics make a strong appeal to biomedical ethics and are challenging its concepts at the same time. New discoveries in human genomics, as e.g. the recently discovered abundance of the phenomenon of copy number variation (CNV), and newly developed high-speed and low-cost sequencing technologies, as e.g. polony sequencing, call for strong interdisciplinary cooperation that includes the various disciplines from the humanities. Looking for approaches that can adequately respond to the new questions posed by science, ethicists are increasingly aware of the need for a shift in emphasis that may even include the revision of key concepts of mainstream biomedical research ethics. Knoppers and Chadwick recently described the emergence of a new set of principles, moving away from a primarily individual-centered ethics towards a normative framework suitable to also address community and population interests. This includes a reappraisal of the dominant status of autonomy. Caulfield and Brownsword scrutinized the very delicate concept of human dignity, criticizing in particular its use as a tool for restrictive policy making in the field of biotechnology and genomics. The obligation of confidentiality is another essential component of traditional medical ethics that has come under review today, its implementation in the clinical setting and in the context of public health, but also its applicability in large-scale biomedical research. Can there be guarantees on privacy and on the maintenance of confidentiality in the era of data sharing and genome-wide association studies? We will examine the concept of confidentiality as a key condition for consent, the original context of its application and its current challenges in genomics' research. Seeking answers to urgent questions concerning possible disclosure, we will introduce the concept of 'open consent', inspired by the moral obligation of veracity and the aim of avoiding disingenuous promises.