TY - BOOK AU - Huppertz, B. AU - Holzinger, A. PY - 2014 DA - 2014// TI - Biobanks–a source of large biological data sets: open problems and future challenges. Interactive knowledge discovery and data mining in biomedical informatics PB - Springer CY - Berlin UR - https://doi.org/10.1007/978-3-662-43968-5_18 DO - 10.1007/978-3-662-43968-5_18 ID - Huppertz2014 ER - TY - JOUR AU - Armstrong, N. AU - Dixon-Woods, M. AU - Thomas, A. AU - Rusk, G. AU - Tarrant, C. PY - 2012 DA - 2012// TI - Do informed consent documents for cancer trials do what they should? A study of manifest and latent functions JO - Sociol Health Illn VL - 34 UR - https://doi.org/10.1111/j.1467-9566.2012.01469.x DO - 10.1111/j.1467-9566.2012.01469.x ID - Armstrong2012 ER - TY - JOUR AU - Wallace, S. E. AU - Gourna, E. G. AU - Laurie, G. AU - Shoush, O. AU - Wright, J. PY - 2015 DA - 2015// TI - Respecting autonomy over time: policy and empirical evidence on Re-consent in longitudinal biomedical research JO - Bioethics VL - 30 UR - https://doi.org/10.1111/bioe.12165 DO - 10.1111/bioe.12165 ID - Wallace2015 ER - TY - JOUR AU - Caulfield, T. AU - Kaye, J. PY - 2009 DA - 2009// TI - Broad consent in biobanking: reflections on seemingly insurmountable dilemmas JO - Med Law Int VL - 10 UR - https://doi.org/10.1177/096853320901000201 DO - 10.1177/096853320901000201 ID - Caulfield2009 ER - TY - JOUR AU - O’Doherty, K. C. AU - Burgess, M. M. AU - Edwards, K. AU - Gallagher, R. P. AU - Hawkins, A. K. AU - Kaye, J. PY - 2011 DA - 2011// TI - From consent to institutions: designing adaptive governance for genomic biobanks JO - Soc Sci Med VL - 73 UR - https://doi.org/10.1016/j.socscimed.2011.05.046 DO - 10.1016/j.socscimed.2011.05.046 ID - O’Doherty2011 ER - TY - STD TI - Garrison NA, Sathe NA, Antommaria AH, Holm IA, Sanderson SC, Smith ME, et al. 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PY - 2010 DA - 2010// TI - “Broad” consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose JO - Soc Sci Med VL - 70 UR - https://doi.org/10.1016/j.socscimed.2009.10.004 DO - 10.1016/j.socscimed.2009.10.004 ID - Petrini2010 ER - TY - JOUR AU - Steinsbekk, K. S. AU - Myskja, B. K. AU - Solberg, B. PY - 2013 DA - 2013// TI - Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? JO - Eur J Hum Genet VL - 21 UR - https://doi.org/10.1038/ejhg.2012.282 DO - 10.1038/ejhg.2012.282 ID - Steinsbekk2013 ER - TY - JOUR AU - Grady, C. AU - Eckstein, L. AU - Berkman, B. AU - Brock, D. AU - Cook-Deegan, R. AU - Fullerton, S. M. PY - 2015 DA - 2015// TI - Broad consent for research with biological samples: workshop conclusions JO - Am J Bioeth VL - 15 UR - https://doi.org/10.1080/15265161.2015.1062162 DO - 10.1080/15265161.2015.1062162 ID - Grady2015 ER - TY - JOUR AU - Resnik, D. B. PY - 2009 DA - 2009// TI - Re-consenting human subjects: ethical, legal and practical issues JO - J Med Ethics VL - 35 UR - https://doi.org/10.1136/jme.2009.030338 DO - 10.1136/jme.2009.030338 ID - Resnik2009 ER - TY - JOUR AU - Dove, E. S. AU - Avard, D. AU - Black, L. AU - Knoppers, B. M. PY - 2013 DA - 2013// TI - Emerging issues in paediatric health research consent forms in Canada: working towards best practices JO - BMC Med Ethics VL - 14 UR - https://doi.org/10.1186/1472-6939-14-5 DO - 10.1186/1472-6939-14-5 ID - Dove2013 ER - TY - JOUR AU - Gainotti, S. AU - Turner, C. AU - Woods, S. AU - Kole, A. AU - McCormack, P. AU - Lochmüller, H. PY - 2016 DA - 2016// TI - Improving the informed consent process in international collaborative rare disease research: effective consent for effective research JO - Eur J Hum Genet VL - 24 UR - https://doi.org/10.1038/ejhg.2016.2 DO - 10.1038/ejhg.2016.2 ID - Gainotti2016 ER - TY - JOUR AU - Bathe, O. F. AU - McGuire, A. L. PY - 2009 DA - 2009// TI - The ethical use of existing samples for genome research JO - Genet Med VL - 11 UR - https://doi.org/10.1097/GIM.0b013e3181b2e168 DO - 10.1097/GIM.0b013e3181b2e168 ID - Bathe2009 ER - TY - JOUR AU - Dixon-Woods, M. AU - Ashcroft, R. E. AU - Jackson, C. J. AU - Tobin, M. D. AU - Kivits, J. AU - Burton, P. R. PY - 2007 DA - 2007// TI - Beyond “misunderstanding”: written information and decisions about taking part in a genetic epidemiology study JO - Soc Sci Med VL - 65 UR - https://doi.org/10.1016/j.socscimed.2007.08.010 DO - 10.1016/j.socscimed.2007.08.010 ID - Dixon-Woods2007 ER - TY - JOUR AU - Dixon-Woods, M. AU - Cavers, D. 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PY - 2015 DA - 2015// TI - The social licence for research: why care.data ran into trouble JO - J Med Ethics VL - 41 UR - https://doi.org/10.1136/medethics-2014-102374 DO - 10.1136/medethics-2014-102374 ID - Carter2015 ER - TY - JOUR AU - Trinidad, S. B. AU - Fullerton, S. M. AU - Bares, J. M. AU - Jarvik, G. P. AU - Larson, E. B. AU - Burke, W. PY - 2012 DA - 2012// TI - Informed consent in genome-scale research: what do prospective participants think? JO - AJOB Prim Res VL - 3 UR - https://doi.org/10.1080/21507716.2012.662575 DO - 10.1080/21507716.2012.662575 ID - Trinidad2012 ER - TY - JOUR AU - Edwards, K. L. AU - Korngiebel, D. M. AU - Pfeifer, L. AU - Goodman, D. AU - Renz, A. AU - Wenzel, L. PY - 2016 DA - 2016// TI - Participant views on consent in cancer genetics research: preparing for the precision medicine era JO - J Community Genet VL - 7 UR - https://doi.org/10.1007/s12687-015-0259-8 DO - 10.1007/s12687-015-0259-8 ID - Edwards2016 ER - TY - JOUR AU - Goodman, D. 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PY - 2006 DA - 2006// TI - Generation Scotland: the Scottish family health study; a new resource for researching genes and heritability JO - BMC Med Genetics VL - 7 UR - https://doi.org/10.1186/1471-2350-7-74 DO - 10.1186/1471-2350-7-74 ID - Smith2006 ER - TY - BOOK AU - Charmaz, K. PY - 2006 DA - 2006// TI - Constructing grounded theory: A practical guide through qualitative analysis PB - Sage CY - London ID - Charmaz2006 ER - TY - JOUR AU - DeCamp, M. AU - Sugarman, J. PY - 2004 DA - 2004// TI - Ethics in behavioral genetics research JO - Account Res VL - 11 UR - https://doi.org/10.1080/725289013 DO - 10.1080/725289013 ID - DeCamp2004 ER - TY - JOUR AU - Haddow, G. AU - Laurie, G. AU - Cunningham-Burley, S. AU - Hunter, K. G. PY - 2007 DA - 2007// TI - Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal JO - Soc Sci Med VL - 64 UR - https://doi.org/10.1016/j.socscimed.2006.08.028 DO - 10.1016/j.socscimed.2006.08.028 ID - Haddow2007 ER - TY - BOOK AU - Webster, A. AU - Brown, N. AU - Douglas, C. AU - Lewis, G. AU - Kaye, J. AU - Tutton, R. PY - 2008 DA - 2008// TI - Public attitudes to third party access and benefit sharing: their application to UK Biobank PB - UK Biobank Ethics and Governance Council CY - London ID - Webster2008 ER - TY - JOUR AU - Barnes, L. AU - Matthews, F. E. AU - Barber, B. AU - Davies, L. AU - Lloyd, D. AU - Brayne, C. PY - 2005 DA - 2005// TI - Brain donation for research: consent and re-consent post Alder Hey JO - Bull Med Ethics VL - N/A ID - Barnes2005 ER - TY - JOUR AU - Hoeyer, K. PY - 2010 DA - 2010// TI - Donors perceptions of consent to and feedback from biobank research: time to acknowledge diversity? 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PY - 2011 DA - 2011// TI - To share or not to share: a randomized trial of consent for data sharing in genome research JO - Genetics Med VL - 13 UR - https://doi.org/10.1097/GIM.0b013e3182227589 DO - 10.1097/GIM.0b013e3182227589 ID - McGuire2011 ER - TY - JOUR AU - Master, Z. AU - Campo-Engelstein, L. AU - Caulfield, T. PY - 2015 DA - 2015// TI - Scientists’ perspectives on consent in the context of biobanking research JO - Eur J Hum Genet VL - 23 UR - https://doi.org/10.1038/ejhg.2014.143 DO - 10.1038/ejhg.2014.143 ID - Master2015 ER - TY - JOUR AU - Ludman, E. J. AU - Fullerton, S. M. AU - Spangler, L. AU - Brown Trinidad, S. AU - Fujii, M. M. AU - Jarvick, G. P. PY - 2010 DA - 2010// TI - Glad you asked: participants’ opinions of re-consent of dbGAP data submission JO - J Empir Res Hum Res Ethics VL - 5 UR - https://doi.org/10.1525/jer.2010.5.3.9 DO - 10.1525/jer.2010.5.3.9 ID - Ludman2010 ER - TY - JOUR AU - Kaye, J. AU - Whitley, E. A. AU - Lund, D. AU - Morrison, M. AU - Teare, H. AU - Melham, K. PY - 2015 DA - 2015// TI - Dynamic consent: a patient interface for twenty-first century research networks JO - Eur J Hum Genet VL - 23 UR - https://doi.org/10.1038/ejhg.2014.71 DO - 10.1038/ejhg.2014.71 ID - Kaye2015 ER - TY - JOUR AU - Williams, H. AU - Spencer, K. AU - Sanders, C. AU - Lund, D. AU - Whitley, E. A. AU - Kaye, J. PY - 2015 DA - 2015// TI - Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research JO - JMIR Med Inform VL - 3 UR - https://doi.org/10.2196/medinform.3525 DO - 10.2196/medinform.3525 ID - Williams2015 ER - TY - JOUR AU - Ram, N. PY - 2009 DA - 2009// TI - Assigning rights and protecting interests: Constructing ethical and efficient legal rights in human tissue research JO - Harvard J Law Technol VL - 23 ID - Ram2009 ER -