Public perspectives on informed consent for biobanking.

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in health. We assessed the public's attitudes toward the proposed biobank, including preferences for providing informed consent. Sixteen focus groups were conducted, and themes arising from the focus groups were tested in a large, representative survey (n=4659) of the general population.

Veterans' attitudes regarding a database for genomic research.

Purpose: Large cohort studies to investigate interactions between genes, environment, and lifestyle require large representative samples of the population. The Department of Veterans Affairs health care system is uniquely positioned to carry out such research, with a large patient population and a sophisticated system of electronic medical records. As Veterans Affairs considers establishing a large database of genetic information and medical records for research purposes, a survey of 931 Veterans Affairs patients was carried out to measure their willingness to participate, what their concerns would be, and their preferences about some aspects of study design.

Public expectations for return of results from large-cohort genetic research.

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country.

Subjects matter: a survey of public opinions about a large genetic cohort study.

Purpose: Cohort studies investigating genes, environment, and lifestyle require large study populations. To recruit and retain participants, it is important to understand the relative significance of influences on people's motivation to participate. To this end, 4659 Americans were surveyed about support for and willingness to participate in a proposed large cohort study.

Research ethics recommendations for whole-genome research: consensus statement.

Interest in whole-genome research has grown substantially over the past few months. This article explores the challenging ethics issues associated with this work.

Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion.

The National Institutes of Health and other federal agencies are considering initiating a cohort study of 500,000 people, including 120,000 children, to measure genetic and environmental influences on common diseases. A community engagement pilot study was conducted to identify public attitudes and concerns about the proposed cohort study, including the ethics of involving children. The pilot included 15 focus groups where the inclusion of children in the proposed cohort study was discussed.