Respect for the individual’s autonomy and private life forms the foundation of the modern health care system’s ethical and legal framework. Informed consent is viewed as crucial for insuring protection of both the individual’s aforementioned rights and collective trust in the healthcare system. Paradoxically, as treatment becomes more individualised, namely through the introduction of personalised medicine, tensions between the individual and the collective(s) are intensified. Through personalized medicine, the individual is intertwined with various collectives – the species, lineage, reference genome, a national collective or a welfare state.
Notably, development of personalised medicine requires access to a vast amount of data about the population, including genetic information. Thus, it prompts questions on the extent to which solidarity in the welfare state creates an expectation of substantial individual contribution for the common good. For instance, could provision of genetic diagnostics for the patient be dependent on providing personal data for research and other purposes? Could genetic relations be expected to share private information, and even subject themselves to comprehensive genetic screening, to support the diagnosis of family members?
In this paper, we draw on the principles of autonomy and solidarity to explore how law constructs the balance between the individual and various collectives in the introduction of personalised medicine. We use the establishment of the Danish National Genome Centre by legislation as a case study for exploring the implicit and explicit tensions.