Literature DB >> 15115024

'Science is really needed--that's all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden.

Klaus Hoeyer1.   

Abstract

In Vasterbotten County in northern Sweden a start-up biotech company has recently gained all commercial rights to one of the worlds largest population based research biobanks. The biobank and the company have publicly emphasized that all donors have given their informed consent to participate, but within the academy it has become debated whether people have been adequately informed. Based on anthropological fieldwork it is shown that many people do not read the information provided. The data do not, however, suggest that donors themselves perceive a lack of information. This article endeavours to make meaningful the apparent lack of interest among donors in the information they are offered. It is argued that the donation of blood should be analysed in its social and historical context rather than as a response to rational assessment of information of research purposes. It implies a conceptualisation of agency more aware of the intersubjective nature of moral negotiation than usually implied in studies of informed consent.

Entities:  

Keywords:  Biomedical and Behavioral Research; Empirical Approach; Genetics and Reproduction; UmanGenomics

Mesh:

Year:  2003        PMID: 15115024     DOI: 10.1080/1463677032000147199

Source DB:  PubMed          Journal:  New Genet Soc        ISSN: 1463-6778


  25 in total

1.  Motivating donors to genetic research? Anthropological reasons to rethink the role of informed consent.

Authors:  Klaus Hoeyer; Niels Lynöe
Journal:  Med Health Care Philos       Date:  2006

2.  Biobanks and the phantom public.

Authors:  Herbert Gottweis; Haidan Chen; Johannes Starkbaum
Journal:  Hum Genet       Date:  2011-07-20       Impact factor: 4.132

3.  Withdrawal from biobank research: considerations and the way forward.

Authors:  Kristina Hug; Göran Hermerén; Mats Johansson
Journal:  Stem Cell Rev Rep       Date:  2012-12       Impact factor: 5.739

Review 4.  Studying potential donors' views on embryonic stem cell therapies and preimplantation genetic diagnosis.

Authors:  Erica Haimes; Jacquelyne Luce
Journal:  Hum Fertil (Camb)       Date:  2006-06       Impact factor: 2.767

5.  Children, longitudinal studies, and informed consent.

Authors:  Gert Helgesson
Journal:  Med Health Care Philos       Date:  2005

6.  Enrolling Genomics Research Participants through a Clinical Setting: the Impact of Existing Clinical Relationships on Informed Consent and Expectations for Return of Research Results.

Authors:  Courtney Berrios; Cynthia A James; Karen Raraigh; Juli Bollinger; Brittney Murray; Crystal Tichnell; Carolyn D Applegate; Amanda L Bergner
Journal:  J Genet Couns       Date:  2017-09-20       Impact factor: 2.537

7.  Flexible positions, managed hopes: the promissory bioeconomy of a whole genome sequencing cancer study.

Authors:  Rachel Haase; Marsha Michie; Debra Skinner
Journal:  Soc Sci Med       Date:  2015-02-13       Impact factor: 4.634

8.  Quantitative aspects of informed consent: considering the dose response curve when estimating quantity of information.

Authors:  N Lynöe; K Hoeyer
Journal:  J Med Ethics       Date:  2005-12       Impact factor: 2.903

9.  Research understanding, attitude and awareness towards biobanking: a survey among Italian twin participants to a genetic epidemiological study.

Authors:  Virgilia Toccaceli; Corrado Fagnani; Lorenza Nisticò; Cristina D'Ippolito; Lorenzo Giannantonio; Sonia Brescianini; Maria Antonietta Stazi
Journal:  BMC Med Ethics       Date:  2009-06-16       Impact factor: 2.652

10.  The role of race and trust in tissue/blood donation for genetic research.

Authors:  Jada Bussey-Jones; Joanne Garrett; Gail Henderson; Mairead Moloney; Connie Blumenthal; Giselle Corbie-Smith
Journal:  Genet Med       Date:  2010-02       Impact factor: 8.822

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