Year: 2018
Type: dissertation
Abstract: Many financial, organizational, regulatory, ethical and societal challenges may hinder or delay the provision of personalized medicine (PM) to people.\nPM aims to adapt prevention, diagnosis and treatment to the molecular and genetic characteristics of the individual patient and her disease. The overarching aim of the thesis was to explore the views of researchers, representatives from patient organizations, and policymakers regarding potential challenges to the provision of PM to people. \nThe researchers explained that they often do not have the necessary resources to feedback individual genetic research results to research participants when such results could have been useful in health care settings to provide more targeted care. To this adds the lack of a regulatory framework to provide results in a sustainable manner. Better solutions are also needed to communicate with research participants and manage informed consent. \nThe representatives from patient organizations were supportive of PM but expressed concerns regarding its cost; they feared that PM might be available only to the socio-economically advantaged. They believed that health care professionals and patients have insufficient knowledge of genetics to endorse PM and questioned whether the majority of patients would be able to take greater responsibility for their health. This contrasts with the views of policymakers who view patients and citizens as highly health literate and actively engaged in their own health care. \nResearchers and representatives from patient organizations proposed several strategies to help address these challenges. Strategies include the design of harmonized guidelines for the feedback of genetic research results to research participants, the development and implementation of dynamic consent procedures, increased education of patients and health care professionals in PM, and the development of sustainable funding mechanisms for PM.
Author: Isabelle Budin Ljøsne
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: green
Awards: G119964413, G1429491158, G2109279595, BBMRI - Large Prospective Cohorts, G2473961061, RD-CONNECT: An integrated platform connecting registries, biobanks and clinical bioinformatics for rare disease research, G3207356259, BeTheCuRE, G393177772, Forensic Geneticists and the Transnational Exchange of DNA data in the EU: Engaging Science with Social Control, Citizenship and Democracy, Biobank Standardisation and Harmonisation for Research Excellence in the European Union, Forensic Geneticists and the Transnational Exchange of DNA data in the EU: Engaging Science with Social Control, Citizenship and Democracy, G5482433029, G5702163051, G601724917, G645381559
OpenAlex ID: W2802465915