Biomaterial Database

Setting standards for DNA banks: toward a model code of conduct. 1996

J E McEwen, and P R Reilly

Boston College Law School, Waltham, Massachusetts, USA.

As genomic research proliferates, DNA banking will become more common. In research, samples will be banked largely in an effort to find and clone genes that predispose to disease. Commercially oriented banks, those that offer services to families, may also become more common. These entities will hold sensitive information. DNA banking is not yet regulated. We argue here that new laws are not needed at this time to regulate DNA banking. We suggest an approach that relies on a professional code of conduct and draws on principles of disclosure inherent to the process used in obtaining informed consent. In addition to suggesting 12 specific recommendations for the code of conduct, we suggest that items should be included in depositor's agreements. We offer a rationale for our suggestions.

UI	MeSH Term	Description	Entries
D007258	Informed Consent	Voluntary authorization, by a patient or research subject, with full comprehension of the risks involved, for diagnostic or investigative procedures, and for medical and surgical treatment.	Consent, Informed
D003219	Confidentiality	The privacy of information and its protection against unauthorized disclosure.	Patient Data Privacy,Privacy of Patient Data,Privileged Communication,Confidential Information,Secrecy,Communication, Privileged,Communications, Privileged,Data Privacy, Patient,Information, Confidential,Privacy, Patient Data,Privileged Communications
D004247	DNA	A deoxyribonucleotide polymer that is the primary genetic material of all cells. Eukaryotic and prokaryotic organisms normally contain DNA in a double-stranded state, yet several important biological processes transiently involve single-stranded regions. DNA, which consists of a polysugar-phosphate backbone possessing projections of purines (adenine and guanine) and pyrimidines (thymine and cytosine), forms a double helix that is held together by hydrogen bonds between these purines and pyrimidines (adenine to thymine and guanine to cytosine).	DNA, Double-Stranded,Deoxyribonucleic Acid,ds-DNA,DNA, Double Stranded,Double-Stranded DNA,ds DNA
D004995	Ethics, Professional	The principles of proper conduct concerning the rights and duties of the professional, relations with patients or consumers and fellow practitioners, as well as actions of the professional and interpersonal relations with patient or consumer families. (From Stedman, 25th ed)	Professional Ethics,Ethic, Professional,Professional Ethic
D006801	Humans	Members of the species Homo sapiens.	Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D016208	Databases, Factual	Extensive collections, reputedly complete, of facts and data garnered from material of a specialized subject area and made available for analysis and application. The collection can be automated by various contemporary methods for retrieval. The concept should be differentiated from DATABASES, BIBLIOGRAPHIC which is restricted to collections of bibliographic references.	Databanks, Factual,Data Banks, Factual,Data Bases, Factual,Data Bank, Factual,Data Base, Factual,Databank, Factual,Database, Factual,Factual Data Bank,Factual Data Banks,Factual Data Base,Factual Data Bases,Factual Databank,Factual Databanks,Factual Database,Factual Databases
D018070	Biological Specimen Banks	Facilities that collect, store, and distribute tissues, e.g., cell lines, microorganisms, blood, sperm, milk, breast tissue, for use by others. Other uses may include transplantation and comparison of diseased tissues in the identification of cancer.	Biobanks,Biological Substance Banks,Biorepository,Bank, Biological Specimen,Bank, Biological Substance,Banks, Biological Specimen,Banks, Biological Substance,Biological Specimen Bank,Biological Substance Bank,Specimen Bank, Biological,Specimen Banks, Biological,Substance Bank, Biological,Substance Banks, Biological,Biobank,Biorepositories
D030561	Databases, Nucleic Acid	Databases containing information about NUCLEIC ACIDS such as BASE SEQUENCE; SNPS; NUCLEIC ACID CONFORMATION; and other properties. Information about the DNA fragments kept in a GENE LIBRARY or GENOMIC LIBRARY is often maintained in DNA databases.	DDBJ,DNA Data Bank of Japan,DNA Data Banks,DNA Databases,Databases, DNA,Databases, DNA Sequence,Databases, Nucleic Acid Sequence,Databases, RNA,Databases, RNA Sequence,EMBL Nucleotide Sequence Database,GenBank,Nucleic Acid Databases,RNA Databases,DNA Databanks,DNA Sequence Databases,European Molecular Biology Laboratory Nucleotide Sequence Database,Nucleic Acid Sequence Databases,RNA Sequence Databases,Bank, DNA Data,Banks, DNA Data,DNA Data Bank,DNA Databank,DNA Database,DNA Sequence Database,Data Bank, DNA,Data Banks, DNA,Databank, DNA,Databanks, DNA,Database, DNA,Database, DNA Sequence,Database, Nucleic Acid,Database, RNA,Database, RNA Sequence,Nucleic Acid Database,RNA Database,RNA Sequence Database,Sequence Database, DNA,Sequence Database, RNA,Sequence Databases, DNA,Sequence Databases, RNA
D030881	Disclosure	Revealing of information, by oral or written communication.	Financial Disclosure,Information Disclosure,Disclosure, Financial,Disclosure, Information,Disclosures, Financial,Financial Disclosures
D032982	Contracts	Agreements between two or more parties, especially those that are written and enforceable by law (American Heritage Dictionary of the English Language, 4th ed). It is sometimes used to characterize the nature of the professional-patient relationship.	Contract