Gene therapy and informed consent decision making: nursing research directions

Area of Science:

• Neurology
• Genetics
• Medical Ethics

Background:

• Gene therapy clinical trials show promise for genetic neuromuscular disorders.
• Nurses are skilled in educating patients on conventional treatments but face challenges with gene therapy decisions.

Purpose of the Study:

• To provide an overview of neuromuscular gene therapy, including delivery methods and progress.
• To discuss risk/benefit perceptions and decision-making factors for gene therapy trial participation.
• To identify future challenges and the need for patient-centered decision support.

Main Methods:

• Literature review of gene therapy principles and clinical trial progress.
• Analysis of factors influencing patient decisions regarding gene therapy participation.
• Discussion of ethical considerations and patient support strategies.

Main Results:

• Gene therapy is a promising treatment for neuromuscular disorders.
• Patient decision-making for gene therapy trials is complex and influenced by risk/benefit perceptions.
• Effective patient education and decision support are crucial for trial participation.

Conclusions:

• Further research is needed to improve gene therapy delivery efficiency.
• Developing patient-centered decision support interventions is essential for future gene therapy trials.
• Addressing challenges in patient education and decision-making will facilitate gene therapy adoption.