Informed consent for biobanking: consensus-based guidelines for adequate comprehension

LM Beskow, CB Dombeck, CP Thompson… - Genetics in …, 2015 - nature.com
Purpose: Federal regulations and best practice guidelines identify categories of information
that should be communicated to prospective biobank participants during the informed …

Scientists' perspectives on consent in the context of biobanking research

Z Master, L Campo-Engelstein… - European Journal of …, 2015 - nature.com
Most bioethics studies have focused on capturing the views of patients and the general
public on research ethics issues related to informed consent for biobanking and only a …

Active choice but not too active: public perspectives on biobank consent models

CM Simon, J L'heureux, JC Murray, P Winokur… - Genetics in …, 2011 - nature.com
Purpose: Despite important recent work, US public attitudes toward specific biobank consent
models are not well understood. Public opinion data can help shape efforts to develop …

Improving biobank consent comprehension: a national randomized survey to assess the effect of a simplified form and review/retest intervention

LM Beskow, L Lin, CB Dombeck, E Gao… - Genetics in …, 2017 - nature.com
Purpose: To determine the individual and combined effects of a simplified form and a
review/retest intervention on biobanking consent comprehension. Methods: We conducted a …

Informed consent in the genomics era

S Rego, ME Grove, MK Cho… - Cold Spring …, 2020 - perspectivesinmedicine.cshlp.org
Informed consent, the process of gathering autonomous authorization for a medical
intervention or medical research participation, is a fundamental component of medical …

[HTML][HTML] Simplifying informed consent for biorepositories: stakeholder perspectives

LM Beskow, JY Friedman, NC Hardy, L Lin… - Genetics in …, 2010 - Elsevier
Purpose Complex and sometimes controversial information must be conveyed during the
consent process for participation in biorepositories, and studies suggest that consent …

A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States

NA Garrison, NA Sathe, AHM Antommaria… - Genetics in …, 2016 - nature.com
Purpose: In 2011, an Advanced Notice of Proposed Rulemaking proposed that de-identified
human data and specimens be included in biobanks only if patients provide consent. The …

Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions

ME Smith, SC Sanderson, KB Brothers… - BMC Medical Research …, 2016 - Springer
Background As biobanks play an increasing role in the genomic research that will lead to
precision medicine, input from diverse and large populations of patients in a variety of health …

[HTML][HTML] Broad consent for health care–embedded biobanking: understanding and reasons to donate in a large patient sample

G Richter, M Krawczak, W Lieb, L Wolff, S Schreiber… - Genetics in …, 2018 - Elsevier
Purpose To facilitate ethically acceptable and practically successful health care–embedded
biobanking, the attitudes and understanding of patients and their motivation to participate …

Experiences with obtaining informed consent for genomic sequencing

BA Bernhardt, MI Roche, DL Perry… - American Journal of …, 2015 - Wiley Online Library
Despite the increased utilization of genome and exome sequencing, little is known about the
actual content and process of informed consent for sequencing. We addressed this by …