Genetic Research with Stored Biological Materials: Ethics and Practice

If a CRC declined to participate, did not respond, or withdrew from our study after agreeing to participate, we replaced it with the next-largest CRC at the same institution (if one existed). Because we found no readily accessible information about the relative size of SPOREs and because some instit...

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Bibliographic Details
Published inIRB Vol. 32; no. 2; pp. 7 - 18
Main Authors Wolf, Leslie E., Bouley, Timothy A., McCulloch, Charles E.
Format Journal Article
LanguageEnglish
Published United States The Hastings Center 01.03.2010
Hastings Center
Subjects
Adult
Analytical forecasting
Annual reports
Bioethics
Biological Specimen Banks - ethics
Child
Colleges & universities
Confidentiality
Consent forms
Deoxyribonucleic acid
Disclosure
DNA
Ethics Committees, Research
Genetic research
Genetic Research - ethics
Genetic testing
Government regulation
Guideline Adherence
Human genetics
Human genome
Humans
In the Field
Informed Consent
Institutional review boards
Institutional review boards (Research ethics)
Medical genetics
Medical research
Methods
Mortality
Ownership
Patient confidentiality
Research ethics
Science policy
Spores
Studies
Tissue and Organ Procurement - ethics
Tissue Donors
United States
United States
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Summary:If a CRC declined to participate, did not respond, or withdrew from our study after agreeing to participate, we replaced it with the next-largest CRC at the same institution (if one existed). Because we found no readily accessible information about the relative size of SPOREs and because some institutions have several SPOREs, we randomly selected one SPORE from the institutions that had more than one. [...] without explicit procedures for coding biological materials, investigators may omit steps that are necessary to protect the confidentiality of research data.
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ISSN:0193-7758
2578-2355
2326-2222
2578-2363