Assessing the understanding of biobank participants.

  title={Assessing the understanding of biobank participants.},
  author={Kelly E. Ormond and Allison L. Cirino and Irene B Helenowski and Rex L. Chisholm and Wendy A. Wolf},
  journal={American journal of medical genetics. Part A},
  volume={149A 2},
Biobanks have been developed as a tool to better understand the genetic basis of disease by linking DNA samples to corresponding medical information. The broad scope of such projects presents a challenge to informed consent and participant understanding. To address this, 200 telephone interviews were conducted with participants in the NUgene Project, Northwestern University's biobank. Interviews included a modified version of the "quality of informed consent measure" (QuIC) and semi-structured… CONTINUE READING