Related Experiment Video
Updated: Jun 30, 2026

FISH for Pre-implantation Genetic Diagnosis
Published on: February 23, 2011
Patient empowerment in clinical genetics services
Marion McAllister1, Katherine Payne, Rhona Macleod
1Nowgen, Manchester, UK. Marion.McAllister@manchester.ac.uk
Clinical genetics services empower patients by providing benefits beyond perceived personal control. This empowerment extends to at-risk relatives and future generations, offering a more holistic view of patient gains.
Area of Science:
- Medical Genetics
- Qualitative Research
- Health Services Research
Background:
- Measuring patient benefits from clinical genetics services is challenging.
- Existing measures like perceived personal control (PPC) may not fully capture all benefits.
Purpose of the Study:
- To develop a theoretical framework for understanding patient benefits in clinical genetics.
- To explore and define the concept of empowerment as a patient benefit.
Main Methods:
- Qualitative grounded theory approach.
- Conducted seven focus groups and 19 interviews with patients, patient representatives, and health professionals.
Main Results:
- A model of empowerment was developed, summarizing patient benefits.
- Empowerment encompasses benefits beyond PPC, including those for relatives and future generations.
Conclusions:
- Empowerment offers a comprehensive framework for evaluating patient benefits in clinical genetics.
- The developed model highlights the broader impact of genetics services on families and future individuals.
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