title: National population-based biobanks for genetic research.
abstract: Clinical practice guidelines derived from genetic research using population-based biobanks could dramatically change the nature of personal and public health medicine. Centralized population-based biobanks have been established or proposed in at least nine countries to date, and many lessons have been learned from these landmark developments. Scientific and governmental leaders in the United States are currently contemplating pending federal legislation regarding the establishment of centralized and networked biobanks. Public health practitioners and clinical care providers may be called on to serve pronounced planning roles at the state level. Possible responsibilities include: formulating legislation, gathering public comment, reviewing research proposals, and developing procedures for informed consent, participant withdrawal, and confidentiality protection. State health agencies may also need to create and/or administer banking facilities. Proper planning may ensure that individual rights are protected while research benefits are maximized.
authors.affiliation: Connecticut Tumor Registry, Department of Community Medicine & Health Care, University of Connecticut School of Medicine, Farmington, Connecticut 06030-6325, USA. hswede@uchc.edu
authors.forename: Helen
authors.initials: H
authors.lastname: Swede
authors.forename: Carol L
authors.initials: CL
authors.lastname: Stone
authors.forename: Alyssa R
authors.initials: AR
authors.lastname: Norwood
mesh_terms: D035843:Biomedical Research; D030541:Databases, Genetic / Q000941:ethics / Q000331:legislation & jurisprudence / Q000639:trends; D016045:Human Genome Project / Q000941:ethics / Q000458:organization & administration; D006801:Humans; D014481:United States