Next generation DNA sequencing. Socio-ethical analysis of standardization in decision and communication patterns of test results

Next generation sequencing (NGS) technologies are becoming increasingly embedded in clinical practice, leading to significant benefits in the form of treatment for patients. Although guidelines have tried to standardize reporting practices across laboratories, previous research has shown that diverging norms and practices remain with regard to reporting of test results, unsolicited findings, and secondary findings. Through this project we aim to explore (a) how laboratory scientists and clinicians decide what information to report; (b) how this information is reported and communicated with patients; (c) how genetic test results are (or are not) being shared within families; and (d) what responsibilities clinicians have towards non-disclosure. The project will use a combination of methodologies, including ethnographic studies, semi-structured interviews and normative ethical analysis. The project will help to better understand the factors that play a role in the standardization of processes and governance of genetic information generated by NGS in the clinical context, and work towards policy development.

Keywords:Next generation sequencing (NGS) technol, unsolicited findings, Family communication

Disciplines:Other philosophy, ethics and religious studies not elsewhere classified, Theory and methodology of philosophy, Philosophy, Ethics, Evolutionary biology, General biology, Social medical sciences