The consent problem within DNA biobanks. Export

@article{citeulike:1858016, abstract = {Large prospective biobanks are being established containing DNA, lifestyle and health information in order to study the relationship between diseases, genes and environment. Informed consent is a central component of research ethics protection. Disclosure of information about the research is an essential element of seeking informed consent. Within biobanks, it is not possible at recruitment to describe in detail the information that will subsequently be collected because people will not know which disease they will develop. It will also be difficult to describe the specific research that will be performed using the biobank, other than to stipulate categories of research or diseases that are not included. Potential subjects can only be given information about the sorts of research that will be performed and by whom. Organisations responsible for biobanks usually argue that this disclosure of information is adequate when seeking informed consent, especially if coupled with a right to withdraw, as it would not be feasible or it would be too expensive to seek consent renewal on a regular basis. However, there are concerns about this 'blanket consent' approach'. Consent waivers have also been proposed in which research subjects entrust their consent with an independent third party to decide whether subsequent research using the biobank is consistent with the original consent provided by the subject.}, address = {Institute of Health Sciences and Public Health Research, University of Leeds, 71-75 Clarendon Road, Leeds LS2 9PL, UK. d.shickle@leeds.ac.uk}, author = {Shickle, D.}, citeulike-article-id = {1858016}, citeulike-linkout-0 = {http://dx.doi.org/10.1016/j.shpsc.2006.06.007}, citeulike-linkout-1 = {http://view.ncbi.nlm.nih.gov/pubmed/16980191}, citeulike-linkout-2 = {http://www.hubmed.org/display.cgi?uids=16980191}, citeulike-linkout-3 = {http://www.scopus.com/record/display.url?view=extended&origin=resultslist&eid=2-s2.0-33748506290}, doi = {10.1016/j.shpsc.2006.06.007}, issn = {1369-8486}, journal = {Stud Hist Philos Biol Biomed Sci}, keywords = {academic\_uses\_abuses, andrew\_j\_wawrzyniak, biobank, citeulike\_terrorism, consent\_problem, context, dna, doh, ehr, elizabeth\_vandermeer, emr, extended\_family\_non\_consent, gareth\_hagger\_johnson, genewatch, grid\_networks, human\_rights, human\_rights\_lawyers, informed\_consent, laura\_l\_kilarski, litigation, mental\_abuse, non-consent, rowntree\_report, uk, us}, month = {September}, number = {3}, pages = {503--519}, posted-at = {2009-10-27 22:29:01}, priority = {2}, title = {The consent problem within DNA biobanks.}, url = {http://dx.doi.org/10.1016/j.shpsc.2006.06.007}, volume = {37}, year = {2006} }

TY - JOUR ID - citeulike:1858016 L3 - citeulike-article-id:1858016 N2 - Large prospective biobanks are being established containing DNA, lifestyle and health information in order to study the relationship between diseases, genes and environment. Informed consent is a central component of research ethics protection. Disclosure of information about the research is an essential element of seeking informed consent. Within biobanks, it is not possible at recruitment to describe in detail the information that will subsequently be collected because people will not know which disease they will develop. It will also be difficult to describe the specific research that will be performed using the biobank, other than to stipulate categories of research or diseases that are not included. Potential subjects can only be given information about the sorts of research that will be performed and by whom. Organisations responsible for biobanks usually argue that this disclosure of information is adequate when seeking informed consent, especially if coupled with a right to withdraw, as it would not be feasible or it would be too expensive to seek consent renewal on a regular basis. However, there are concerns about this 'blanket consent' approach'. Consent waivers have also been proposed in which research subjects entrust their consent with an independent third party to decide whether subsequent research using the biobank is consistent with the original consent provided by the subject. IS - 3 JF - Stud Hist Philos Biol Biomed Sci SN - 1369-8486 AD - Institute of Health Sciences and Public Health Research, University of Leeds, 71-75 Clarendon Road, Leeds LS2 9PL, UK. d.shickle@leeds.ac.uk EP - 519 TI - The consent problem within DNA biobanks. VL - 37 SP - 503 KW - academic_uses_abuses KW - andrew_j_wawrzyniak KW - biobank KW - citeulike_terrorism KW - consent_problem KW - context KW - dna KW - doh KW - ehr KW - elizabeth_vandermeer KW - emr KW - extended_family_non_consent KW - gareth_hagger_johnson KW - genewatch KW - grid_networks KW - human_rights KW - human_rights_lawyers KW - informed_consent KW - laura_l_kilarski KW - litigation KW - mental_abuse KW - non-consent KW - rowntree_report KW - uk KW - us AU - Shickle, D PY - 2006/09// UR - http://dx.doi.org/10.1016/j.shpsc.2006.06.007 ER -