The collective nature of personalized medicine

Abstract

Precision medicine, incorporating personalized medicine, is an emerging medical model that holds great promise for improving the prevention, diagnosis and treatment of many diseases. The future success of precision medicine, however, depends on the establishment of large databases that collate diverse data, including family genealogies, disease histories, drug sensitivities and genomic data. Herein I raise some of the social and ethical challenges that such a system faces, specifically: the enrolment of volunteers into large genetic databases; the need for a change in mindset of clinicians, patients and the wider public; and the need for interdisciplinary ethics considering the emerging issues. Finally I argue that the future potential of 'personalized' medicine crucially depends on 'collective' participation of informed citizens.

Precision Medicine - The Golden Gate for Detection, Treatment and Prevention of Alzheimer’s Disease

“…First, the use of precision medicine in the field of neurodegenerative diseases will fundamentally change our approach of “taxonomizing” simplified (reductionistic) theoretical disease categories (ultimately challenging a so far largely unchallenged and uncontroversial definition of what is “normal” versus “pathological”) (140) into a much more differentiated and dynamic dimensional concept of genetically and biological diverse subsets of defined pathophysiologies. In this scenario, the classical categorical diagnosis based on clinical late-stage phenotypes will likely shift to the biomarker-based (guided) dimensional approach, which will likely move healthcare solutions and spending from inefficient “one-size-fits-all” treatment to more effective and less risky and more economic customized (tailored) personalized therapy and prevention (140, 141).…”

“…In this scenario, the classical categorical diagnosis based on clinical late-stage phenotypes will likely shift to the biomarker-based (guided) dimensional approach, which will likely move healthcare solutions and spending from inefficient “one-size-fits-all” treatment to more effective and less risky and more economic customized (tailored) personalized therapy and prevention (140, 141). However, the patient might choose to have genetic and/or biomarker testings for early risk assessment and detection of a potentially untreatable disease – like some forms of neurodegenerative diseases and dementia disorders – but, subsequently, decline to be informed of the test’s results, ultimately posing serious ethical decisions and more demanding and complex physician-patient communication and agreement processes (139).…”

“…Practices of security, transparency, and accountability will take on extraordinary importance in the implementation of precision medicine in the field of neurodegenerative diseases and dementia disorders. Altogether, major challenges of precision medicine encompass scientific and technological issues, security, and benefits of “omics” testing, development of new technologies and assessment methods, related ethical considerations, and socially related (economic, educational, lifestyle) data collection and practice (140). Paradoxically, the implementation of an individual-centered model is clearly dependent on a large international collective effort (140) involving various stakeholders (researchers, caregivers, payers, regulators, policy makers, governments, and citizens in general).…”

“…Altogether, major challenges of precision medicine encompass scientific and technological issues, security, and benefits of “omics” testing, development of new technologies and assessment methods, related ethical considerations, and socially related (economic, educational, lifestyle) data collection and practice (140). Paradoxically, the implementation of an individual-centered model is clearly dependent on a large international collective effort (140) involving various stakeholders (researchers, caregivers, payers, regulators, policy makers, governments, and citizens in general). Unfortunately and inevitably in the beginning stage, the variety of stakeholders having differentiated goals and interests as well as different levels of scientific literacy (145,146) may lead to conflicts of interest and misunderstandings in a complex societal and multidisciplinary arena blurring boundaries between research, healthcare, politics, and society.…”

Changing the mindset for precision medicine: from incentivized biobanking models to genomic data

“…As we might expect, the list of hurdles to successful implementation of precision medicine has been growing, from technical and legal concerns over data security to ethical issues regarding how to amass and operationalize an open database consisting of patients' electronic medical records, lifestyle information and genetic data. Among these challenges, it was recently suggested in this journal that we must change the 'mindset' of patients, healthcare practitioners and the wider public (McGonigle, 2016). It is argued that precision medicine depends, perhaps paradoxically, on collective participation, and accordingly that we will need to encourage unprecedented collaborative efforts and extensive 'citizen science' (Prainsack, 2014;McGonigle, 2016).…”