On 4 August, members from the ROADMAP project published a research paper on the ethical concerns and social implications generated by predictive modelling in Alzheimer´s disease (AD) in the Journal of Alzheimer´s Disease. The team carried out a systematic review using a variety of databases, also complementing the outputs with grey literature. They then analysed the publications through a thematic analysis technique. Through that, they were able to identify thirty-one ethical issues as well as social concerns that correspond to eight ethical principles:
i) respect for autonomy,
ii) beneficence,
iii) non-maleficence,
iv) equality, justice, and diversity,
v) identity and stigma,
vi) privacy,
vii) accountability, transparency, and professionalism, and
viii) uncertainty avoidance.
The team stressed that a lot of the literature notes that the development of a disease-modifying treatment would be necessary in order to justify for the assessment of AD risk while there seem to be little debate about upcoming “challenges in providing equitable access to it, establishing long-term treatment outcomes and social consequences of this approach, e.g., medicalisation.” The article can be found here: https://doi.org/10.3233/JAD-191159
This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 116020 (“ROADMAP”). This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.