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Project

Whole genome sequencing. A 'genetic' report for every child?

Whole genome sequencing (WGS) is forecast to have a significant impact on the field of human genetics in the near future. The sheer volume of information generated by WGS promises to challenge the policies surrounding genetic testing of children, as it raises several issues, including: the rights of parents to access their childs genetic information, the best interest of the children, the right (not) to know, privacy rights, the clinical utility of retrieved information, the level of consent, the duty to recontact of healthcare professionals, and counseling issues. The general objective is to analyze the ethical and legal aspects with regard to the implementation of WGS in minors. This research project will be based on a strategy of triangulation in which various types of information will be analyzed (legal documents, normative documents and ethical and legal academic literature, as well data collection resulting from qualitative interviews). Our results will inform the development of policy orientations with regard to the implementation of WGS in children in the research and in the clinic, as well as in the context of direct-to-consumer companies and neonatal screening. Two stakeholders meetings are proposed to orient agreement on key recommendations. The project will be coordinated by two research institutes with a long standing tradition of collaboration, and with the necessary expertise and networks, as well as with international project management experience.
Date:1 Jan 2014  →  31 Dec 2018
Keywords:whole genome, children, Genetic testing
Disciplines:Other philosophy, ethics and religious studies not elsewhere classified, Theory and methodology of philosophy, Philosophy, Ethics