Genetic susceptibility testing for neurodegenerative diseases: ethical and practice issues

Area of Science:

• Neurogenetics
• Bioethics
• Medical Genetics

Background:

• Advances in understanding neurodegenerative disease genetics increase opportunities for genetic susceptibility testing.
• Direct-to-consumer testing for conditions like Alzheimer's and Parkinson's expands ethical and practical challenges beyond clinical settings.

Purpose of the Study:

• To review the ethical and practical issues surrounding genetic susceptibility testing for neurodegenerative diseases.
• To discuss implications for research, clinical practice, and consumer-based testing.
• To identify future growth areas in neurogenetic testing.

Main Methods:

• Literature review and synthesis of ethical, clinical, and societal considerations.
• Case example of APOE gene testing for Alzheimer's disease risk.
• Discussion of implications from multisite randomized clinical trials.

Main Results:

• Genetic testing necessitates careful consideration of test access, informed consent, risk communication, and genetic discrimination.
• Disclosure methods, clinical utility, psychological responses, and testing minors present complex challenges.
• Pharmacogenomics and screening for high-risk activities are emerging areas.

Conclusions:

• Responsible implementation of genetic susceptibility testing requires addressing multifaceted ethical and practical issues.
• Ongoing research and policy development are needed to navigate the complexities of neurogenetic testing.
• The field is evolving with new applications and technologies like whole-genome sequencing.