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Title: | Personal Genomes in Practice: Exploring Citizen and Healthcare Professionals' Perspectives on Personalized Genomic Medicine and Personal Health Data Spaces Using a Mixed-Methods Design | Authors: | Tommel, Judith Kenis , Daan Lambrechts, Nathalie Brohet, Richard M. Swysen, Jordy Mollen, Lotte Hoefmans, Marie-Jose F. PUSPARUM, Murih Evers, Andrea W. M. Ertaylan, Goekhan Roos, Marco Hens, Kristien Houwink, Elisa J. F. |
Issue Date: | 2023 | Publisher: | MDPI | Source: | Genes, 14 (4) (Art N° 786) | Abstract: | Ongoing health challenges, such as the increased global burden of chronic disease, are increasingly answered by calls for personalized approaches to healthcare. Genomic medicine, a vital component of these personalization strategies, is applied in risk assessment, prevention, prognostication, and therapeutic targeting. However, several practical, ethical, and technological challenges remain. Across Europe, Personal Health Data Space (PHDS) projects are under development aiming to establish patient-centered, interoperable data ecosystems balancing data access, control, and use for individual citizens to complement the research and commercial focus of the European Health Data Space provisions. The current study explores healthcare users' and health care professionals' perspectives on personalized genomic medicine and PHDS solutions, in casu the Personal Genetic Locker (PGL). A mixed-methods design was used, including surveys, interviews, and focus groups. Several meta-themes were generated from the data: (i) participants were interested in genomic information; (ii) participants valued data control, robust infrastructure, and sharing data with non-commercial stakeholders; (iii) autonomy was a central concern for all participants; (iv) institutional and interpersonal trust were highly significant for genomic medicine; and (v) participants encouraged the implementation of PHDSs since PHDSs were thought to promote the use of genomic data and enhance patients' control over their data. To conclude, we formulated several facilitators to implement genomic medicine in healthcare based on the perspectives of a diverse set of stakeholders. | Notes: | Tommel, J (corresponding author), Leiden Univ, Inst Psychol, Fac Social & Behav Sci, Neuropsychol Unit,Hlth Med & Neuropsychol Unit, Wassenaarseweg 52, NL-2333 AK Leiden, Netherlands.; Tommel, J (corresponding author), Univ Groningen, Univ Med Ctr Groningen, Dept Psychiat, Hanzepl 1, NL-9713 GZ Groningen, Netherlands.; Kenis, D (corresponding author), Univ Antwerp, Dept Philosophy, Rodestr 14, B-2000 Antwerp, Belgium. j.tommel@fsw.leidenuniv.nl; daan.kenis@uantwerpen.be |
Keywords: | genomic medicine;personalized medicine;mixed-methodspersonal health data space;ethics;genetic data;Belgium;The Netherlands | Document URI: | http://hdl.handle.net/1942/40178 | e-ISSN: | 2073-4425 | DOI: | 10.3390/genes14040786 | ISI #: | 000979339700001 | Rights: | 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/). | Category: | A1 | Type: | Journal Contribution |
Appears in Collections: | Research publications |
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Personal Genomes in Practice_ Exploring Citizen and Healthcare Professionals’ Perspectives on Personalized Genomic Medicine and Personal Health Data Spaces Using a Mixed-Methods Design.pdf | Published version | 1.29 MB | Adobe PDF | View/Open |
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