Personalized medicine is commonly described as moving away from a one-size-fits-all approach, towards healthcare services that are tailored to the needs and characteristics of individuals. Its focus on profiling, prevention, early detection, and tailored treatments is considered as a good way to rise to the political, social and scientific challenges characterising contemporary healthcare. On the one hand, this approach is able to account for the biological variability in treatment responses across the general population. In this respect, it appears to be the best way to accommodate scientific advancements in the understanding of disease and illness into the practice of healthcare. On the other, its focus on individual responsibility for health meets the social demand of cost-effective models of healthcare provision, which is made necessary by the huge impact of healthcare costs on national budgets. By advocating for the requirement, on the side of citizens, to partake to the healthcare process and to actively contribute to the achievement of health outcomes, this emerging model can address the challenge of containing costs, while at the same time improving the quality of services, and health levels in the general population.

A wide range of experts and policy-makers has acknowledged the benefits that personalized medicine can offer, and the importance of paving the way to its implementation. This conviction has led to the development of a whole range of public health strategies, which aim at reforming healthcare. In accordance to the aims of personalized medicine, these reforms put a strong emphasis on a shift from consent to choice in health-related decision-making. Rather than being reactive to symptoms and health conditions, citizens – within this vision – are required to be responsible for both the improvement of services offered by the system, and their own wellbeing. Personalized medicine can provide citizens with the opportunity to leave better lives and to gain a greater mastery over their health. However, what is required to them is to step up, and to contribute to the success of this new paradigm of medicine.

For this reason, most of healthcare reform proposals across Europe consider the reliance on empowerment as one of their core tenets. Personalized medicine, they argue, entails an empowering step, which is likely to produce: 1) a shift from reactive medicine to participatory, proactive, pre-emptive and preventive medicine; 2) a data-driven approach to medicine: patient-driven integration of information from multiple sources (e.g. genomic profiling, biobanks, environmental and life-style data); 3) citizen-led public decision-making about the healthcare system; 4) patient-centred tailoring of treatments and prevention. Roughly put, the commitment to empowerment allows for thinking ahead the roles of citizenry and experts for personalized medicine. It carries the potential of putting individuals – being patients or citizens – at the heart of the healthcare system.

The recognition of empowerment as a flagship value for contemporary policy-making in healthcare is not surprising. With its origins in pedagogy and social psychology, this concept is traditionally associated to the emancipatory ability of producing (or gaining mastery over) an intended state of affairs. In other words, the concept has always described the conveyance of the unequivocally desirable goal of developing the capacity (power) to do something. However, a wholeheartedly acceptance of its discourse within personalized medicine, runs the risk of leaving its dark side unannounced and unexplored. First, emphasizing empowerment might unfairly inflate citizen’s responsibilities for their health. The empowered role entailed in personalized medicine ties individuals to obligations regarding their health, and the sustainability of the whole system. How to make sure that we are not putting too much responsibility on their shoulders? Second, taking responsibility for health away from the physician or the healthcare system, may indeed give citizens greater control of their own health. However, such an approach would need to ensure that the lack of traditional socio-political structures in healthcare meets the different health needs of all citizens. To what extent could the empowerment of citizens be detrimental to those lacking adequate skills to be responsible for their health? Third, the sole granting of an increased access to information and factors that determine individual health does not ensure an improvement of health within the general population by itself. Quite the contrary, it is likely that the devolution of agency entailed in empowerment will worsen access and health outcomes across the population. There may be in fact social factors such as race, culture, socioeconomic context, gender, etc. having an impact on the individual capacity to control health. How to ensure that empowerment and personalized medicine meet some basic equity and access requirements?

Though ascribed with the potential of yielding a more precise and cost-effective model of healthcare, little is known about these critical issues surrounding empowerment. In particular, defenders of this approach beg the question of the many ways in which shifting responsibilities for health could be counterproductive for both clinicians and patients. For this reason, promoters of personalized medicine should be more precise about what goals their appeals to empowerment are meant to achieve. Needless to say, this could allow European citizens to weigh the relative value of these goals against their own interests. At the same time, proponents of this approach should be more concerned with the potential shortcomings of the empowering step entailed in personalized medicine. A good start in this process may be the avoidance of inflated claims about the unequivocal benefits of empowerment, which have the only effect of reducing public confidence about the likelihood of its promises.

References:

1. Buchanan, D.R. An Ethic for Health Promotion: Rethinking the Sources of Human Well-Being. New York: Oxford University Press, 2000.
2. European Science Foundation. Forward Look: Personalised Medicine for the European Citizen. Towards more precise medicine for the diagnosis, treatment and prevention of disease (iPM). 2012
3. Juengst, E.T., M. A. Flatt, and R. A. Settersten Jr. “Personalized Genomic Medicine and the Rhetoric of Empowerment.” Hastings Center Report 42, no. 5 (2012): 34-40.
4. Tengland, P.A. “Behavior Change or Empowerment: On the Ethics of Health-Promotion Strategies.” Public Health Ethics 5, no. 2 (2012): 140-153.