Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report

Area of Science:

• Genomic Research Ethics
• Clinical Research Best Practices

Background:

• Current guidelines for genomic research consent are inconsistent.
• This inconsistency poses challenges for participants and clinicians involved in both care and research.
• Clinicians face unique ethical dilemmas when returning research findings that impact patient care.

Purpose of the Study:

• To discuss ethical issues and best practices in clinically based genomic research.
• To address the specific challenges of returning research results to participants/patients.
• To develop principles for ethical clinically based genomic research.

Main Methods:

• A multidisciplinary group of 14 stakeholders convened in Exeter.
• Discussions focused on ethical issues and best practices in clinical genomic research.
• Emphasis was placed on the return of research results to participants.

Main Results:

• Ethical principles should guide, rather than dictate, research practices.
• Researchers/clinicians must identify and consult with key stakeholders.
• Stakeholder input should be integrated throughout the research lifecycle.

Conclusions:

• A combination of principles and practical guidelines can advance ethical clinical genomic research.
• Flexible ethical frameworks are crucial for navigating complex research scenarios.
• Engaging diverse stakeholders is essential for responsible genomic research conduct.