Personal genomes in practice : exploring citizen and healthcare professionals’ perspectives on personalized genomic medicine and personal health data spaces using a mixed-methods design
| Autor: | Judith Tommel, Daan Kenis, Nathalie Lambrechts, Richard M. Brohet, Jordy Swysen, Lotte Mollen, Marie-José F. Hoefmans, Murih Pusparum, Andrea W. M. Evers, Gökhan Ertaylan, Marco Roos, Kristien Hens, Elisa J. F. Houwink |
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| Přispěvatelé: | Kenis, Daan/0000-0002-3105-8251, Pusparum, Murih/0000-0001-9560-0612, Brohet, Richard/0000-0003-4472-9322, Lambrechts, Nathalie/0000-0003-1896-0483, Hens, Kristien/0000-0003-1062-7918, 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. |
| Jazyk: | angličtina |
| Rok vydání: | 2023 |
| Předmět: | |
| Zdroj: | Genes Genes; Volume 14; Issue 4; Pages: 786 |
| ISSN: | 2073-4425 |
| Popis: | 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. The PGL project was funded by a DATA2PERSON grant from the Dutch Research Council (NWO), with grant ID 628.011.022. D.K. is funded by Research Foundation—Flanders (FWO) under Grant predoctoral Fellowship fundamental research (1112423N). We would like to thank all participants for their participation in the study. Additionally, we thank Leo Geudens, Greet Ieven, Bettina Blaumeiser, and Isabelle Huys for additional support in the IAM Frontier study. Regarding the PGL focus group study, we thank the designers from Ontwerpbureau Evers + de Gier for designing the clickable mock-up PGL; Milon van Vliet for her help as an observer during focus group sessions; Rick Overkleeft, Sander van Boom, Arthur Schreuder, Jesse Swen, Johan den Dunnen, and Guido van ‘t Noordende for their help in developing the interview protocol and topic list; and all other members involved in the PGL project. |
| Databáze: | OpenAIRE |
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