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 …

Individuals participating in biobanks and other large research projects are increasingly
asked to provide broad consent for open-ended research use and widespread sharing of …

Purpose: Despite growing concerns toward maintaining participants' privacy, individual
investigators collecting tissue and other biological specimens for genomic analysis are …

Purpose: Some large population biobanks that house biospecimens and health information
for research seek broad consent from participants, whereas others reconsent for specific …

Purpose: Federal regulations and best practice guidelines identify categories of information
that should be communicated to prospective biobank participants during the informed …

Research assessing attitudes toward consent processes for high-throughput genomic-wide
technologies and widespread sharing of data is limited. In order to develop a better …

Background: Genomics research data are often widely shared through a variety of
mechanisms including publication, meetings and online databases. Re-identification of …

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 …

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 …

The success of biobank-based genomic research is widely dependent on people's
willingness to donate their tissue. Thus, stakeholders' opinions should be considered in the …