New ethical framework for using AI to speed up newborn screening

Diagnosing rare diseases often takes years, delaying access to treatment and support. The Screen4Care project, funded by the EU, is working to reduce this delay by combining newborn screening with artificial intelligence and machine learning tools. To ensure this technology is used responsibly, the project has developed a Code of Ethical Practice for handling patient data.

To be effective, the Code of Ethical Practice focuses specifically on the challenges most relevant to the Screen4Care project, such as data privacy, informed consent, and responsible data sharing. A clearly defined scope helps guide ethical decisions throughout the project.

The Code of Ethics Practice was developed through collaboration with a wide range of stakeholders, including researchers, legal experts, and patient groups. This “co-creation” approach ensures that diverse perspectives are reflected in the final framework.

Recognising the fast-changing nature of AI and data regulation, the Code of Ethical Practice is designed to be flexible and regularly updated. This allows the project to adapt to new risks and requirements as they emerge.

Finally, the Code of Ethical Practice is written to be accessible to those without an ethics background. “The content should be tailored for researchers and non-ethics experts by clarifying terms, explaining principles and rules, and linking them to practical tasks,” says Sylvia Martin, researcher at the Centre for Research Ethics & Bioethics at Uppsala University, and first author of the article.

By Fanny Klingvall

Do you want to know more? Read the article: Martin, S., Piperkova, A., Zschüntzsch, J. et al. “Code of ethical practice” for sharing and access to personal data for AI-/ ML-based technologies in rare diseases genetic NBS research project: a collaborative construction in a European IMI project. AI Ethics (2025). DOI: 10.1007/s43681-025-00727-3