Autonomy and the patient's right 'not to know' in clinical whole-genomic sequencing

摘要

In their recent publication on whole-genomic sequencing (WGS), Ayuso et al identify ethical challenges around the disclosure of 'incidental findings' (IF) and propose recommendations for informed consent (IC) in a clinical setting. They note that WGS could become clinically routine as technologies develop and time and cost of testing decreases. Based on a comprehensive review and analysis of relevant literatures, they propose an ethical return of clinical IE The authors suggest that at a minimum, the IC form for WGS for diagnostic purposes should include pre-test counseling and general information common to all genetic tests as well as additional content specific to WGS regarding IF (p1). Their proposed recommendations draw on Berg's category-based binning framework model of disclosure.