Informed consent in biobank research: A deliberative approach to the debate
Author
Abstract
Suggested Citation
Download full text from publisher
As the access to this document is restricted, you may want to search for a different version of it.
References listed on IDEAS
- Boulton, Mary & Parker, Michael, 2007. "Informed consent in a changing environment," Social Science & Medicine, Elsevier, vol. 65(11), pages 2187-2198, December.
- Burgess, Michael M., 2007. "Proposing modesty for informed consent," Social Science & Medicine, Elsevier, vol. 65(11), pages 2284-2295, December.
- Kent, Gerry, 1996. "Shared understandings for informed consent: The relevance of psychological research on the provision of information," Social Science & Medicine, Elsevier, vol. 43(10), pages 1517-1523, November.
- Miller, Tina & Boulton, Mary, 2007. "Changing constructions of informed consent: Qualitative research and complex social worlds," Social Science & Medicine, Elsevier, vol. 65(11), pages 2199-2211, December.
- Abelson, Julia & Forest, Pierre-Gerlier & Eyles, John & Smith, Patricia & Martin, Elisabeth & Gauvin, Francois-Pierre, 2003. "Deliberations about deliberative methods: issues in the design and evaluation of public participation processes," Social Science & Medicine, Elsevier, vol. 57(2), pages 239-251, July.
Citations
Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
Cited by:
- Jonas Lander & Tobias Hainz & Irene Hirschberg & Daniel Strech, 2014. "Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-17, December.
- Walmsley, Heather L., 2011. "Stock options, tax credits or employment contracts please! The value of deliberative public disagreement about human tissue donation," Social Science & Medicine, Elsevier, vol. 73(2), pages 209-216, July.
- Street, Jackie & Duszynski, Katherine & Krawczyk, Stephanie & Braunack-Mayer, Annette, 2014. "The use of citizens' juries in health policy decision-making: A systematic review," Social Science & Medicine, Elsevier, vol. 109(C), pages 1-9.
- O'Doherty, Kieran C. & Hawkins, Alice K. & Burgess, Michael M., 2012. "Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation," Social Science & Medicine, Elsevier, vol. 75(9), pages 1604-1611.
- Nicole Curato & Marit Böker, 2016. "Linking mini-publics to the deliberative system: a research agenda," Policy Sciences, Springer;Society of Policy Sciences, vol. 49(2), pages 173-190, June.
- De Vries, Raymond & Stanczyk, Aimee & Wall, Ian F. & Uhlmann, Rebecca & Damschroder, Laura J. & Kim, Scott Y., 2010. "Assessing the quality of democratic deliberation: A case study of public deliberation on the ethics of surrogate consent for research," Social Science & Medicine, Elsevier, vol. 70(12), pages 1896-1903, June.
- Melanie Goisauf & Gillian Martin & Heidi Beate Bentzen & Isabelle Budin-Ljøsne & Lars Ursin & Anna Durnová & Liis Leitsalu & Katharine Smith & Sara Casati & Marialuisa Lavitrano & Deborah Mascalzoni &, 2019. "Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research," PLOS ONE, Public Library of Science, vol. 14(9), pages 1-22, September.
Most related items
These are the items that most often cite the same works as this one and are cited by the same works as this one.- Putniņa, Aivita, 2013. "Bioethics and power: Informed consent procedures in post-socialist Latvia," Social Science & Medicine, Elsevier, vol. 98(C), pages 340-344.
- Chiumento, Anna & Rahman, Atif & Frith, Lucy, 2020. "Writing to template: Researchers’ negotiation of procedural research ethics," Social Science & Medicine, Elsevier, vol. 255(C).
- Sadie McEvoy & Frans H. M. van de Ven & Reinder Brolsma & Jill H. Slinger, 2019. "Evaluating a Planning Support System’s Use and Effects in Urban Adaptation: An Exploratory Case Study from Berlin, Germany," Sustainability, MDPI, vol. 12(1), pages 1-27, December.
- Giuseppe Di Liddo & Annalisa Vinella, 2021. "Centralized standards and local taxation in municipal waste management," Annals of Public and Cooperative Economics, Wiley Blackwell, vol. 92(4), pages 603-619, December.
- Querubin S. Yap & Jon K. Webber, 2015. "Developing Corporate Culture In A Training Department: A Qualitative Case Study Of Internal And Outsourced Staff," Review of Business and Finance Studies, The Institute for Business and Finance Research, vol. 6(1), pages 43-56.
- Blackstock, K.L. & Kelly, G.J. & Horsey, B.L., 2007. "Developing and applying a framework to evaluate participatory research for sustainability," Ecological Economics, Elsevier, vol. 60(4), pages 726-742, February.
- Real, Alejandra & Hickey, Gordon M., 2013. "Publicly funded research: A participative experience from the Chilean Native Forest Research Fund," Forest Policy and Economics, Elsevier, vol. 37(C), pages 37-43.
- Irene Fafaliou & Euthalia Tzanalaridou & Apostolos Ballas, 2010. "Is Rationing an Option for Approaching Healthcare Services Provision? The Case of the Greek Cardiac Patients," International Advances in Economic Research, Springer;International Atlantic Economic Society, vol. 16(1), pages 109-121, February.
- Kingori, Patricia, 2013. "Experiencing everyday ethics in context: Frontline data collectors perspectives and practices of bioethics," Social Science & Medicine, Elsevier, vol. 98(C), pages 361-370.
- repec:cep:sticas:/184 is not listed on IDEAS
- Clare Bayley & Simon French, 2008. "Designing a Participatory Process for Stakeholder Involvement in a Societal Decision," Group Decision and Negotiation, Springer, vol. 17(3), pages 195-210, May.
- Swaans, Kees & Broerse, Jacqueline & Meincke, Maylin & Mudhara, Maxwell & Bunders, Joske, 2009. "Promoting food security and well-being among poor and HIV/AIDS affected households: Lessons from an interactive and integrated approach," Evaluation and Program Planning, Elsevier, vol. 32(1), pages 31-42, February.
- Mauro Serapioni & Pedro Lopes Ferreira & Patrícia Antunes, 2014. "Participação em Saúde: Conceitos e Conteúdos," Notas Económicas, Faculty of Economics, University of Coimbra, issue 40, pages 26-42, December.
- Degeling, Chris & Rychetnik, Lucie & Street, Jackie & Thomas, Rae & Carter, Stacy M., 2017. "Influencing health policy through public deliberation: Lessons learned from two decades of Citizens'/community juries," Social Science & Medicine, Elsevier, vol. 179(C), pages 166-171.
- Thurston, Wilfreda E. & MacKean, Gail & Vollman, Ardene & Casebeer, Ann & Weber, Myron & Maloff, Bretta & Bader, Judy, 2005. "Public participation in regional health policy: a theoretical framework," Health Policy, Elsevier, vol. 73(3), pages 237-252, September.
- Scutchfield, F. Douglas & Hall, Laura & Ireson, Carol L., 2006. "The public and public health organizations: Issues for community engagement in public health," Health Policy, Elsevier, vol. 77(1), pages 76-85, June.
- Bombard, Yvonne & Abelson, Julia & Simeonov, Dorina & Gauvin, Francois-Pierre, 2011. "Eliciting ethical and social values in health technology assessment: A participatory approach," Social Science & Medicine, Elsevier, vol. 73(1), pages 135-144, July.
- Joanna Dyczkowska & Tomasz Dyczkowski, 2020. "Building Stakeholder Relations through Ongoing Engagement and Constructive Dialogue: Lessons from Large Biopharmaceutical Companies," European Research Studies Journal, European Research Studies Journal, vol. 0(Special 2), pages 733-746.
- Cox, Susan M. & Kazubowski-Houston, Magdalena & Nisker, Jeff, 2009. "Genetics on stage: Public engagement in health policy development on preimplantation genetic diagnosis," Social Science & Medicine, Elsevier, vol. 68(8), pages 1472-1480, April.
- Deng, Chung-Yeh & Wu, Chia-Ling, 2010. "An innovative participatory method for newly democratic societies: The "civic groups forum" on national health insurance reform in Taiwan," Social Science & Medicine, Elsevier, vol. 70(6), pages 896-903, March.
- Devkota, Bishnu Prasad, 2020. "Social inclusion and deliberation in response to REDD+ in Nepal’s community forestry," Forest Policy and Economics, Elsevier, vol. 111(C).
More about this item
Keywords
Informed consent Biobanks Public engagement Deliberative democracy Canada;Statistics
Access and download statisticsCorrections
All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:68:y:2009:i:4:p:781-789. See general information about how to correct material in RePEc.
If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.
If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .
If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.
For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .
Please note that corrections may take a couple of weeks to filter through the various RePEc services.