title: A survey of DNA diagnostic laboratories regarding DNA banking.
abstract: This article reports the findings of a survey of 148 academically based and commercial DNA diagnostic labs regarding DNA banking (defined as the storage of individual DNA samples in some form with identifiers for later retrieval). The population surveyed consisted of all laboratories listed with HELIX, a national directory of DNA diagnostic labs that includes a fairly comprehensive listing of clinical service labs as well as a large number of research labs. The survey was concerned primarily with the legal and ethical issues that the long-term storage of DNA may raise. The survey inquired into the respondents' policies and procedures concerning (1) the extent of DNA banking and of interest in developing DNA banking in academia and industry and (2) the degree to which DNA banks had developed written internal policies and/or a written depositor's agreement (a signed document defining the rights and obligations of the person from whom the sample was taken and the bank) designed to anticipate or prevent some of the ethical and legal problems that can arise from the long-term retention of DNA. Our research suggests that (1) the activity of DNA banking is growing, particularly in the academic setting, and (2) most academically based DNA banks lack written internal policies, written depositor's agreements, or other relevant documentation regarding important aspects of this activity.
authors.affiliation: Eunice Kennedy Shriver Center for Mental Retardation, Division of Social Science, Ethics, and Law, Waltham, MA 02254, USA.
authors.forename: J E
authors.initials: JE
authors.lastname: McEwen
authors.forename: P R
authors.initials: PR
authors.lastname: Reilly
mesh_terms: D018070:Biological Specimen Banks / Q000331:legislation & jurisprudence / Q000639:trends*; D019411:Clinical Laboratory Techniques / Q000639:trends*; D032962:Consent Forms; D004247:DNA; D030561:Databases, Nucleic Acid; D030881:Disclosure; D004282:Documentation; D004992:Ethics, Medical; D035082:Federal Government; D036281:Genetic Research; D006801:Humans; D007753:Laboratories / Q000331:legislation & jurisprudence / Q000639:trends*; D016134:Organizational Policy; D028701:Patient Rights; D011786:Quality Control; D035842:Research Subjects; D011795:Surveys and Questionnaires; D014019:Tissue Donors
chemical_list: D004247:DNA