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Personal Genomes in Practice: Exploring Citizen and Healthcare Professionals' Perspectives on Personalized Genomic
Judith Tommel1,2, Daan Kenis3, Nathalie Lambrechts4
1Health, Medical, and Neuropsychology Unit, Institute of Psychology, Faculty of Social and Behavioural Sciences, Leiden University, Wassenaarseweg 52, 2333 AK Leiden, The Netherlands.
Genes
|April 28, 2023
Summary
Patients desire genomic information for personalized medicine but require data control and trust. Personal Health Data Spaces (PHDS) can facilitate genomic data use and enhance patient autonomy.
Area of Science:
- Genomic Medicine
- Health Informatics
- Bioethics
Background:
- Personalized healthcare is crucial for managing chronic diseases.
- Genomic medicine offers personalized risk assessment, prevention, and treatment strategies.
- Challenges in genomic medicine include practical, ethical, and technological hurdles.
Purpose of the Study:
- To explore healthcare users' and professionals' views on personalized genomic medicine.
- To assess perspectives on Personal Health Data Space (PHDS) solutions, specifically the Personal Genetic Locker (PGL).
- To identify facilitators for implementing genomic medicine in healthcare.
Main Methods:
- Mixed-methods approach utilizing surveys, interviews, and focus groups.
- Exploration of stakeholder perspectives on genomic data access, control, and use.
- Analysis of themes related to data control, trust, and autonomy.
Main Results:
- Participants showed interest in genomic information and valued data control.
- Autonomy, institutional, and interpersonal trust were central concerns.
- Stakeholders encouraged PHDS implementation to promote genomic data use and patient control.
Conclusions:
- PHDS can enhance patient control and facilitate genomic data utilization.
- Trust and autonomy are critical for successful genomic medicine implementation.
- Stakeholder perspectives offer valuable insights for developing effective genomic healthcare strategies.
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