Ethical Challenges in Autism Genomics: Recommendations for Researchers
Natri, Chapman, Heraty, Dwyer, Walker, Kapp, Dron, Martinez-Agosto, Mikkola and Doherty (2023)
Genetic research and clinical translation raise questions around ethics particularly for vulnerable or marginalised communities. Autistic research and advocacy communities have expressed concerns over current practices. They stress the need for a shift in paradigms and practices to ensure benefits and reduce harm to Autistic participants and the wider Autistic community. With a focus on enhancing the health, well-being and autonomy of Autistic persons, the authors build on a framework of bioethical principles. They provide a background for these concerns and present recommendations for ethically sustainable and justice-oriented genetic and genomic Autism research. The authors make recommendations to guide responsible research conduct and informed consent practices. They discuss the ethical challenges, with a focus on highly vulnerable individuals and groups. Additionally, they consider the clinical translation of Autism genetics studies. The guidelines discussed were developed by an interdisciplinary working group, made up of Autistic and non-Autistic individuals, with an aim to enhance quality of life of Autistic individuals.
