Enduring and Emerging Challenges of Informed Consent | New England Journal of Medicine
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The introduction of diagnostic clinical genome and exome sequencing (CGES) is changing
the scope of practice for clinical geneticists. Many large institutions are making a significant …

Over 100 million research participants around the world have had research array-based
genoty** (GT) or genome sequencing (GS), but only a small fraction of these have been …

In this paper, we examine the limits of informed consent with particular focus on ways in
which various factors can overwhelm decision-making capacity. We introduce overwhelm as …

Despite rapid technical progress and demonstrable effectiveness for some types of
diagnosis and therapy, much remains to be learned about clinical genome and exome …

Purpose Alternative models of genetic counseling are needed to meet the rising demand for
genomic sequencing. Digital tools have been proposed as a method to augment traditional …

This paper summarizes the current controversies surrounding the identification and
disclosure of “incidental” or “secondary” findings from genomic sequencing and the …

The time required to reach a correct diagnosis is a key concern for rare disease (RD)
patients. Diagnostic delay can be intolerably long, often described as an “odyssey” and, for …

Background Current medical practice includes the application of genomic sequencing (GS)
in clinical and research settings. Despite expanded use of this technology, the process of …

The increased international sharing of data in research consortia and the introduction of new
technologies for sequencing challenge the informed consent (IC) process, adding …