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Published on: May 21, 2020
Bioethical issues in neuropsychiatric genetic disorders
Joaquin Fuentes1, M Concepción Martín-Arribas
1Service of Child & Adolescence Psychiatry, Policlinica Guipúzcoa, GAUTENA Autism Society, San Sebastián, Spain. jfuentes@ipeuropa.com
Summary
Neurogenetic disorders present unique bioethical challenges, especially regarding consent for patients with cognitive impairments. Addressing these requires improved ethical research and support for patient participation.
Area of Science:
- Neuroscience
- Genetics
- Bioethics
Background:
- Neurogenetic disorders share traits with rare diseases, posing complex ethical dilemmas in clinical settings and research.
- Cognitive or communicative impairments in patients necessitate special consent and assent procedures.
- Autistic behaviors or sociocommunicative challenges are common, impacting ethical considerations.
Purpose of the Study:
- To highlight the bioethical challenges in neurogenetic disorder research and clinical care.
- To explore the ethical implications of screening programs for early intervention.
- To identify potential solutions for ethical conflicts in personal support services.
Main Methods:
- Literature review of bioethical issues in neurogenetic disorders.
- Analysis of ethical conflicts in clinical practice and research.
- Exploration of alternative ethical frameworks and support mechanisms.
Main Results:
- Significant ethical conflicts arise from limited research in clinical care and underapplication of biomedical ethics in support services.
- Screening programs for early intervention present bioethical challenges.
- Existing ethical guidelines may not adequately address the specific needs of individuals with neurogenetic disorders.
Conclusions:
- Enhanced ethical frameworks are needed for neurogenetic disorder research and patient care.
- Developing personal service portfolios and bioethical committees can improve support.
- Empowering patients and representatives in decision-making is crucial for ethical practice.
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