Ethics and Policies in Human Genetics

Ethics and Policies in Human Genetics address the responsible use of genetic information and technologies, ensuring that research and clinical applications respect human rights, privacy, and societal values. Core ethical principles include autonomy and informed consent, ensuring individuals understand and voluntarily agree to genetic testing or participation in research; confidentiality and privacy to protect sensitive genetic data; beneficence and non-maleficence to maximize benefits while minimizing harm; and justice to guarantee equitable access to genetic services. Common ethical concerns involve genetic discrimination in employment or insurance, privacy of genomic information, prenatal and preimplantation genetic testing, gene editing, and informed consent in populations with limited understanding. Policies and regulations provide a framework for ethical practice, including laws like the Genetic Information Nondiscrimination Act (GINA), institutional review boards for research oversight, controlled access to genomic databases, and clinical guidelines for genetic counseling. Emerging challenges include ethical considerations in AI-driven genomics, direct-to-consumer genetic testing, and biobanking. Together, ethical principles and policies ensure that advances in human genetics and genomics are applied responsibly, balancing scientific innovation with societal, legal, and moral responsibilities.