Iceland

Guðmundsdóttir, Margrét Lilja; Nordal, Salvör; Häyry, Matti; Chadwick, Ruth; Árnason, Vilhjálmur; Árnason, Garðar

doi:10.1017/cbo9780511611087.007

Cited by 4 publications

(3 citation statements)

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“…9 Factual recruitment rates in the Icelandic Cancer Project (ICP) during 2001-2002 were higher: 88% of eligible patients and 82% of controls agreed to open-ended storage of samples for use in other cancer research projects, including genetic and commercial research. 25 In 2002, the willingness to join the UK Biobank was estimated to 34%.…”

Section: Resultsmentioning

confidence: 99%

“…By tracking references from contemporary literature on public attitudes to biobank research, we identified nine public attitude surveys from Sweden, 2,8 Iceland, 9 the United Kingdom, 10 Ireland, 11 the United States, [12][13][14] and Singapore 15 addressing willingness to participate in biobank research or to store samples for future research. As sample donors are often recruited in health care, we also included two British surveys conducted on patients.…”

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

Hypothetical and factual willingness to participate in biobank research

Johnsson¹,

Helgesson²,

Rafnar³

et al. 2010

Eur J Hum Genet

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In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and Singapore to factual participation rates in 12 biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, 12 suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited.

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Hypothetical and factual willingness to participate in biobank research

Johnsson¹,

Helgesson²,

Rafnar³

et al. 2010

Eur J Hum Genet

View full text Add to dashboard Cite

show abstract

“…This is generally interpreted as support of a consent requirement (Merz, 1997), but whether people prefer broad (Chen et al, 2005) or specific consent (Eriksson, 2007;Human Genetics Commission, 2000), and when and under which conditions differs remarkably between the surveys. 4) Commercial access to public biobanks is accepted by a majority Stegmayr and Asplund, 2002); nevertheless, it is viewed more as a necessary evil than as the preferred research infrastructure (e.g., Cragg Ross Dawson, 2000;Gudmundsdóttir and Nordal, 2007). In a British survey, for example, genetic research results were viewed as belonging to the public (Human Genetics Commission, 2000).…”

Section: Donor Perspectivesmentioning

confidence: 99%

The Ethics of Research Biobanking: A Critical Review of the Literature

Hoeyer

2008

Biotechnology and Genetic Engineering Reviews

101

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Human tissue has been stored and used for research on a regular basis for more than 80 years. During the 1990s, collections of human tissue suddenly became framed as ethical problems in a process reflecting developments in genetic research intertwined with developments in patient rights and steps towards increased commercialization of research. This review describes the process of framing tissue storage as an ethical problem and the solutions proposed in the process. It gives an overview of the academic debate and relates this debate to empirical studies of donor attitudes and interests. It points to the clear discrepancy between the concerns of donors, legislators and ethicists. The academic debate and legislatory action tend to focus on informed consent, and most of the concerns that donors have remain unattended to.

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Trading in Cold Blood?

Hoeyer

2012

Trust in Biobanking

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Iceland

Cited by 4 publications

References 0 publications

Hypothetical and factual willingness to participate in biobank research

Hypothetical and factual willingness to participate in biobank research

The Ethics of Research Biobanking: A Critical Review of the Literature

Trading in Cold Blood?

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