A randomized controlled study of a consent intervention for participating in an NIH genome sequencing study.
- Erin Turbitt,
- Paola P Chrysostomou,
- Holly L Peay,
- Alexis R Heidlebaugh,
- Lawrence M Nelson,
- Barbara B Biesecker
Eur J Hum Genet 2018 Feb 16. Epub 2018 Feb 16.
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes Health, Bethesda, MD, USA.
To make an informed choice to participate in a genome sequencing study that may yield primary and secondary findings, one understands relevant information in the context of personal values. Consent forms to enroll in a sequencing study can be long and complex. The efficacy of the professional encounter to consider the information contained in the consent form and make an informed choice is unknown. Read More