Predicting intention to biobank: a national survey

Critchley, Christine; Nicol, Dianne; Otlowski, Margaret; Stranger, Mark

doi:10.1093/eurpub/ckq136

Cited by 81 publications

(76 citation statements)

References 9 publications

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“…Together, these results suggest that the biobank itself is an especially important determinant of public trust and intentions, and if it is a public biobank, then the public, or at least those who are more aware of biobanking, may be comfortable with it sharing its resources to private third parties or, indeed, to international researchers. This is in line with previous findings highlighting the importance of trust in the biobank on public support and intentions [32], as well as those who demonstrated that the effect of commercialisation (i.e. public vs. private) on trust in stem cell researchers was greater for the type of research organisation than the source of funding [21].…”

Section: Discussionsupporting

confidence: 92%

The Impact of Commercialisation and Genetic Data Sharing Arrangements on Public Trust and the Intention to Participate in Biobank Research

Critchley

Nicol

Otlowski

2015

Public Health Genomics

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Objectives: The necessity for biobanks to share their resources with third parties poses potential risks to public trust and the intention to participate in genetic research. We explore the effects of data sharing and the type of third-party access (public vs. private) on public trust and, in turn, the intention to participate in biobank research. Methods: An experimental design was used to assess a national sample of 1,701 Australians via a computer-assisted telephone interview. Results: The results revealed that trust and the intention to participate significantly decreased in relation to private compared to public biobanks, and when access to third-party researchers was allowed compared to when it was not. Somewhat surprisingly, no differences were found in relation to the third party being international compared to Australian, but trust and the intention to participate were significantly eroded when private third parties were allowed access. Those with a university education were particularly distrustful of private biobanks and biobanks that allowed access, while those who were more aware of genetic databases appeared more confident with biobanks sharing with private-sector third parties. Conclusion: The pattern of results suggests that public awareness of the need for biobanks to share their resources widely needs to be increased to maintain public trust and support.

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Section: Discussionsupporting

confidence: 92%

The Impact of Commercialisation and Genetic Data Sharing Arrangements on Public Trust and the Intention to Participate in Biobank Research

Critchley

Nicol

Otlowski

2015

Public Health Genomics

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“…[17][18][19][20] In fact, numerous studies have found a positive correlation between level of trust and degree of participation not only in biobanking, but in research as a whole. 5,6,8,9,[21][22][23][24][25] Although further work would be needed to explicitly measure trust in research enterprises and researchers, our results may be indicative of trust of respondents in the scientific community in Jordan. Public engagement, dialogues, and communication have been suggested as means of establishing public trust among participants.…”

Section: Discussionmentioning

confidence: 88%

Public support and consent preference for biomedical research and biobanking in Jordan

2012

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The success of any biobank depends on a number of factors including public's view of research and the extent to which it is willing to participate in research. As a prototype of surrounding countries, public interest in research and biobanking in addition to the influence and type of informed consent for biobanking were investigated in Jordan. Data were collected as part of a national survey of 3196 individuals representing the Jordanian population. The majority of respondents (88.6%) had a positive perception of the level of research in Jordan and they overwhelmingly (98.2%) agreed to the concept of investing as a country in research. When respondents were asked if the presence of an informed consent would influence their decision to participate in biobanking, more individuals (19.8%) considered having an informed consent mechanism as a positive factor than those who considered it to have negative connotations (13.1%). However, a substantial portion (65%) did not feel it affected their decision. The majority of survey participants (64%) expressed willingness to participate in biobanking and over 90% of them preferred an opt-in consent form whether general (75.2%) or specific for disease or treatment (16.9%). These results indicate a promising ground for research and biobanking in Jordan. Educational programs or mass awareness campaigns to promote participation in biobanking and increase awareness about informed consent and individual rights in research will benefit both the scientific community as well as the public.

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“…However, this positivity is complex and depends heavily on the area of genetics, the purpose of the research and how the genetic technologies will be applied (Condit, 2010). For example, people have been found to be particularly positive in relation to medical genomics research that is intended to improve diagnoses and prevent or treat human illness (Botkin et al, 2012;Critchley et al, 2012;Gaskell, Allum and Stares, 2003). Support has also been demonstrated in relation to genetic applications that enable an individual to determine their ancestry (Jonassaint et al, 2010) and parentage (Gilding and Turney, 2006).…”

Section: Direct-to-consumer Genetic Testsmentioning

confidence: 99%

Public reaction to direct-to-consumer online genetic tests: Comparing attitudes, trust and intentions across commercial and conventional providers

et al. 2014

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The success of personalised medicine depends upon the public's embracing genetic tests. Tests that claim to predict an individual's future health can now be accessed via online companies outside of conventional health regulations. This research assessed the extent to which the public embrace direct-to-consumer (DTC) genetic tests relative to those obtained by a conventional medical practitioner (MP). It also examined the reasons for differences across providers using a randomised experimental telephone survey of 1000 Australians. Results suggest that people were significantly less likely to approve of, and order a DTC genetic test administered by a company compared to a MP because they were less trusting of companies' being able to protect their privacy and provide them with access to genetic expertise and counselling. Markets for DTC genetic tests provided by companies would therefore significantly increase if trust in privacy protection and access to expertise are enhanced through regulation.

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Predicting intention to biobank: a national survey

Cited by 81 publications

References 9 publications

The Impact of Commercialisation and Genetic Data Sharing Arrangements on Public Trust and the Intention to Participate in Biobank Research

The Impact of Commercialisation and Genetic Data Sharing Arrangements on Public Trust and the Intention to Participate in Biobank Research

Public support and consent preference for biomedical research and biobanking in Jordan

Public reaction to direct-to-consumer online genetic tests: Comparing attitudes, trust and intentions across commercial and conventional providers

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