Literature DB >> 16980191

The consent problem within DNA biobanks.

Darren Shickle1.   

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.

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Year:  2006        PMID: 16980191     DOI: 10.1016/j.shpsc.2006.06.007

Source DB:  PubMed          Journal:  Stud Hist Philos Biol Biomed Sci        ISSN: 1369-8486


  25 in total

1.  Biobank governance: heterogeneous modes of ordering and democratization.

Authors:  Herbert Gottweis; Georg Lauss
Journal:  J Community Genet       Date:  2011-12-07

Review 2.  Integrating biobanks: addressing the practical and ethical issues to deliver a valuable tool for cancer research.

Authors:  R William G Watson; Elaine W Kay; David Smith
Journal:  Nat Rev Cancer       Date:  2010-08-12       Impact factor: 60.716

Review 3.  Informed consent in genomics and genetic research.

Authors:  Amy L McGuire; Laura M Beskow
Journal:  Annu Rev Genomics Hum Genet       Date:  2010       Impact factor: 8.929

Review 4.  The Bio-PIN: a concept to improve biobanking.

Authors:  J J Nietfeld; Jeremy Sugarman; Jan-Eric Litton
Journal:  Nat Rev Cancer       Date:  2011-03-17       Impact factor: 60.716

5.  Demographic differences in willingness to provide broad and narrow consent for biobank research.

Authors:  Altovise T Ewing; Lori A H Erby; Juli Bollinger; Eva Tetteyfio; Luisel J Ricks-Santi; David Kaufman
Journal:  Biopreserv Biobank       Date:  2015-03-31       Impact factor: 2.300

Review 6.  Biobanking for research in surgery: are surgeons in charge for advancing translational research or mere assistants in biomaterial and data preservation?

Authors:  Wolfgang E Thasler; Reinhard M K Thasler; Celine Schelcher; Karl-Walter Jauch
Journal:  Langenbecks Arch Surg       Date:  2013-02-22       Impact factor: 3.445

7.  'Cool! and creepy': engaging with college student stakeholders in Michigan's biobank.

Authors:  Tevah Platt; Jodyn Platt; Daniel B Thiel; Nicole Fisher; Sharon L R Kardia
Journal:  J Community Genet       Date:  2014-06-12

8.  'Born in Michigan? You're in the biobank': engaging population biobank participants through Facebook advertisements.

Authors:  J E Platt; T Platt; D Thiel; S L R Kardia
Journal:  Public Health Genomics       Date:  2013-06-21       Impact factor: 2.000

9.  A trade secret model for genomic biobanking.

Authors:  John M Conley; Robert Mitchell; R Jean Cadigan; Arlene M Davis; Allison W Dobson; Ryan Q Gladden
Journal:  J Law Med Ethics       Date:  2012       Impact factor: 1.718

10.  Prospective biorepository participants' perspectives on access to research results.

Authors:  Laura M Beskow; Sondra J Smolek
Journal:  J Empir Res Hum Res Ethics       Date:  2009-09       Impact factor: 1.742

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