Abstract
AbstractPersonalized medicine (PM) operates with biological data to optimize therapy or prevention and to achieve cost reduction. Associated data may consist of large variations of informational subtypes e.g. genetic characteristics and their epigenetic modifications, biomarkers or even individual lifestyle factors. Present innovations in the field of information technology have already enabled the procession of increasingly large amounts of such data (‘volume’) from various sources (‘variety’) and varying quality in terms of data accuracy (‘veracity’) to facilitate the generation and analyzation of messy data sets within a short and highly efficient time period (‘velocity’) to provide insights into previously unknown connections and correlations between different items (‘value’). As such developments are characteristics of Big Data approaches, Big Data itself has become an important catchphrase that is closely linked to the emerging foundations and approaches of PM. However, as ethical concerns have been pointed out by experts in the debate already, moral concerns by stakeholders such as patient organizations (POs) need to be reflected in this context as well. We used an empirical-ethical approach including a website-analysis and 27 telephone-interviews for gaining in-depth insight into German POs’ perspectives on PM and Big Data. Our results show that not all POs are stakeholders in the same way. Comparing the perspectives and political engagement of the minority of POs that is currently actively involved in research around PM and Big Data-driven research led to four stakeholder sub-classifications: ‘mediators’ support research projects through facilitating researcher’s access to the patient community while simultaneously selecting projects they preferably support while ‘cooperators’ tend to contribute more directly to research projects by providing and implemeting patient perspectives. ‘Financers’ provide financial resources. ‘Independents’ keep control over their collected samples and associated patient-related information with a strong interest in making autonomous decisions about its scientific use. A more detailed terminology for the involvement of POs as stakeholders facilitates the adressing of their aims and goals. Based on our results, the ‘independents’ subgroup is a promising candidate for future collaborations in scientific research. Additionally, we identified gaps in PO’s knowledge about PM and Big Data. Based on these findings, approaches can be developed to increase data and statistical literacy. This way, the full potential of stakeholder involvement of POs can be made accessible in discourses around PM and Big Data.
Publisher
Springer Science and Business Media LLC
Subject
Health Information Management,Health Informatics,Information Systems,Medicine (miscellaneous)
Reference38 articles.
1. Bundesministerium für Bildung und Forschung (2018) Rahmenprogramm Gesundheitsforschung der Bundesregierung. Berlin. https://www.bmbf.de/upload_filestore/pub/Rahmenprogramm_Gesundheitsforschung.pdf. Accessed 20 Nov 2020. Available in German only.
2. Coalition for Collaborative Care (2020) What we do. https://coalitionforpersonalisedcare.org.uk/what-we-do/. Accessed 06 December 2020
3. World Health Organization (2013) Health 2020. A European policy framework and strategy for the 21st century. http://www.euro.who.int/__data/assets/pdf_file/0011/199532/Health2020-Long.pdf?ua=1. Accessed 20 November 2020
4. Mittelstadt B, Floridi L (2016) Introduction. In: Mittelstadt BD, Floridi L (eds) The Ethics of Biomedical Big Data, 1st edn. Springer International Publishing Switzerland, pp 2-3.
5. Schleidgen S, Klingler C, Bertram T, Rogowski WH, Marckmann G (2013) What is personalized medicine: sharpening a vague term based on systematic literature review. BMC Med Ethics. 14: 55. https://doi.org/10.1186/1472-6939-14-55
Cited by
9 articles.
订阅此论文施引文献
订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献