Smart governance strategies for the early diagnostics of Alzheimer’s disease: An explorative study on the prevention of medicalization

Abstract

Alzheimer’s disease (AD) is one of the biggest health challenges in the Netherlands today. One way of trying to tackle this problem is the development of early diagnostics of AD. However the development of these techniques and its application is controversial since it can enhance a medicalization trend. Medicalization is defined as the process by which nonmedical problems are defined and consequently treated as medical conditions. To exploit the advantages early diagnostics of AD can offer, while at the same time avoiding medicalization, policy makers should develop smart governance strategies. These smart governance strategies rely on characteristics of Responsible Innovation (RI) that encompasses social, moral and ethical impacts of innovation and implements tools like ‘stakeholder collaboration’, ‘transparency’ and ‘a bottom-up approach’. The theoretical background of this research consists of three main areas namely (1) two dimensions of AD diagnosis and treatment: the medical and non-medical approach, (2) technology-push of early diagnostics and demand-pull of patient and societal needs and (3) relevant RI characteristics for developing smart governance strategies. After executing a systemic literature review and conducting semi-structured interviews with experts in the field, results show that there is a high amount of attention for the medical approach of AD diagnosing and treatment: the development of early diagnostics of AD. An increase in diagnosing or ‘labelling’ leads to stigmatization of AD patients. This can deteriorate these patients even faster. Secondly it becomes clear that a misbalance between the technology-push and demand-pull can enhance a medicalization trend. Finally, a science-policy gap is identified, due to ineffective implementation of stakeholder collaboration and a bottom-up approach. Transparency in governance in general is also lacking. Therefore it can be concluded that there are three main fields of advice that form a refined framework for the development of smart governance strategies concerning early diagnostics of AD. These three main areas of advice are: (1) safeguard the balance between a technology-push and demand-pull, (2) prevent stigmatization and (3) improve effective collaboration and communication between scientists and policy makers. Further research into handhelds for the development of these smart governance strategies is necessary.