Personal Genomes in Practice : Exploring Citizen and Healthcare Professionals' Perspectives on Personalized Genomic Medicine and Personal Health Data Spaces Using a Mixed-Methods Design
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.
| Medienart: |
E-Artikel |
|---|
| Erscheinungsjahr: |
2023 |
|---|---|
| Erschienen: |
2023 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:14 |
|---|---|
| Enthalten in: |
Genes - 14(2023), 4 vom: 24. März |
| Sprache: |
Englisch |
|---|
| Beteiligte Personen: |
Tommel, Judith [VerfasserIn] |
|---|
| Links: |
|---|
| Themen: |
Belgium |
|---|
| Anmerkungen: |
Date Completed 01.05.2023 Date Revised 02.05.2023 published: Electronic Citation Status MEDLINE |
|---|
| doi: |
10.3390/genes14040786 |
|---|
| funding: |
|
|---|---|
| Förderinstitution / Projekttitel: |
|
| PPN (Katalog-ID): |
NLM356111202 |
|---|
| LEADER | 01000naa a22002652 4500 | ||
|---|---|---|---|
| 001 | NLM356111202 | ||
| 003 | DE-627 | ||
| 005 | 20231226210308.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 231226s2023 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.3390/genes14040786 |2 doi | |
| 028 | 5 | 2 | |a pubmed24n1186.xml |
| 035 | |a (DE-627)NLM356111202 | ||
| 035 | |a (NLM)37107544 | ||
| 035 | |a (PII)786 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rakwb | ||
| 041 | |a eng | ||
| 100 | 1 | |a Tommel, Judith |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Personal Genomes in Practice |b Exploring Citizen and Healthcare Professionals' Perspectives on Personalized Genomic Medicine and Personal Health Data Spaces Using a Mixed-Methods Design |
| 264 | 1 | |c 2023 | |
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a ƒaComputermedien |b c |2 rdamedia | ||
| 338 | |a ƒa Online-Ressource |b cr |2 rdacarrier | ||
| 500 | |a Date Completed 01.05.2023 | ||
| 500 | |a Date Revised 02.05.2023 | ||
| 500 | |a published: Electronic | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a 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 | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a Research Support, Non-U.S. Gov't | |
| 650 | 4 | |a Belgium | |
| 650 | 4 | |a The Netherlands | |
| 650 | 4 | |a ethics | |
| 650 | 4 | |a genetic data | |
| 650 | 4 | |a genomic medicine | |
| 650 | 4 | |a mixed-methods | |
| 650 | 4 | |a personal health data space | |
| 650 | 4 | |a personalized medicine | |
| 700 | 1 | |a Kenis, Daan |e verfasserin |4 aut | |
| 700 | 1 | |a Lambrechts, Nathalie |e verfasserin |4 aut | |
| 700 | 1 | |a Brohet, Richard M |e verfasserin |4 aut | |
| 700 | 1 | |a Swysen, Jordy |e verfasserin |4 aut | |
| 700 | 1 | |a Mollen, Lotte |e verfasserin |4 aut | |
| 700 | 1 | |a Hoefmans, Marie-José F |e verfasserin |4 aut | |
| 700 | 1 | |a Pusparum, Murih |e verfasserin |4 aut | |
| 700 | 1 | |a Evers, Andrea W M |e verfasserin |4 aut | |
| 700 | 1 | |a Ertaylan, Gökhan |e verfasserin |4 aut | |
| 700 | 1 | |a Roos, Marco |e verfasserin |4 aut | |
| 700 | 1 | |a Hens, Kristien |e verfasserin |4 aut | |
| 700 | 1 | |a Houwink, Elisa J F |e verfasserin |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t Genes |d 2011 |g 14(2023), 4 vom: 24. März |w (DE-627)NLM220446326 |x 2073-4425 |7 nnns |
| 773 | 1 | 8 | |g volume:14 |g year:2023 |g number:4 |g day:24 |g month:03 |
| 856 | 4 | 0 | |u http://dx.doi.org/10.3390/genes14040786 |3 Volltext |
| 912 | |a GBV_USEFLAG_A | ||
| 912 | |a GBV_NLM | ||
| 951 | |a AR | ||
| 952 | |d 14 |j 2023 |e 4 |b 24 |c 03 | ||