Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions

Pullman, Daryl; Etchegary, Holly; Gallagher, Katherine; Hodgkinson, Kathy; Keough, Montgomery; Morgan, David R.; Street, Catherine

doi:10.1038/gim.0b013e31822e578f

Cited by 60 publications

(47 citation statements)

References 26 publications

(29 reference statements)

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“…In relation to research priorities, people expressed an expectation that biobanks should prioritise disease focus, concentrate on a broad range of diseases and not conduct research that is morally questionable. This supports the work of Pullman et al (2012), who found that an important reason given for choosing not to participate in biobank research was the type of research focus (i.e. stigmatised diseases), and more general research that demonstrates that people are concerned about future use of their donated samples in morally questionable research (Lemke et al, 2010).…”

Section: Discussionsupporting

confidence: 72%

“…privacy, type of condition studied and who benefits) within the one study (e.g. Pullman et al, 2012). Between-group study comparisons are also difficult, given the lack of standardisation across the operationalisation of constructs (e.g.…”

Section: Identifying Public Expectations Of Genetic Biobanksmentioning

confidence: 99%

“…For example, the heightened privacy risk associated with collaboration with external researchers may be considered acceptable if the research is expected to assist in finding a cure for cancer. Indeed, Pullman et al (2012) found, among a sample of 300 Canadians, that the 'public is much less concerned about privacy and confidentiality with respect to their biobanked samples and more concerned about who could potentially benefit from the research and the types of diseases that will be studied' (p. 233).…”

Section: Identifying Public Expectations Of Genetic Biobanksmentioning

confidence: 99%

See 2 more Smart Citations

Identifying public expectations of genetic biobanks

2016

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Understanding public priorities for biobanks is vital for maximising utility and efficiency of genetic research and maintaining respect for donors. This research directly assessed the relative importance the public place on different expectations of biobanks. Quantitative and qualitative results from a national sample of 800 Australians revealed that the majority attributed more importance to protecting privacy and ethical conduct than maximising new healthcare benefits, which was in turn viewed as more important than obtaining specific consent, benefit sharing, collaborating and sharing data. A latent class analysis identified two distinct classes displaying different patterns of expectations. One placed higher priority on behaviours that respect the donor ( n = 623), the other on accelerating science ( n = 278). Additional expectations derived from qualitative data included the need for biobanks to be transparent and to prioritise their research focus, educate the public and address commercialisation.

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Section: Discussionsupporting

confidence: 72%

Section: Identifying Public Expectations Of Genetic Biobanksmentioning

confidence: 99%

Section: Identifying Public Expectations Of Genetic Biobanksmentioning

confidence: 99%

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Identifying public expectations of genetic biobanks

2016

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“…Although concerns about privacy protection in genomic research exist, they do not influence public's willingness to consent and were rated least important. 38,46 Furthermore, in quantitative studies with patients and the public, respondents expressed a great sense of trust in non-profit or publicly funded research organizations as well as in doctors, hospitals and university-based researchers. However, they had little or no trust in for-profit organizations, insurance companies and the pharmaceutical industry.…”

mentioning

confidence: 99%

Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature

et al. 2015

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The success of biobank-based genomic research is widely dependent on people's willingness to donate their tissue. Thus, stakeholders' opinions should be considered in the development of best practice guidelines for research and recruiting participants. We systematically analyzed the empirical literature describing different stakeholders' views towards ethical questions with regard to type of consent, data sharing and return of incidental findings. Patients are more open to one-time general consent than the public. Only a small proportion desires recontact if the research aim changed. A broad consent model would prevent only a small proportion of patients from participating in research. Although professionals are concerned about a risk of reidentification, patients and the public support data sharing and find that the benefit of research outweighs the potential risk of reidentification. However, they desire detailed information about the privacy protection measures. Regarding the return of incidental findings, the public and professionals focus on clinically actionable results, whereas patients are interested in receiving as much information as possible. For professionals, concrete guidelines that help managing the return of incidental findings should be warranted. For this it would be helpful addressing the different categories -actionable, untreatable and inheritable diseases -upfront with patients and public. European Journal of Human Genetics (2015Genetics ( ) 23, 1607Genetics ( -1614 doi:10.1038/ejhg.2015; published online 4 March 2015 INTRODUCTIONTechnical advances in whole-genome sequencing enable the identification of genomic variations involved in the development of diseases, such as acquired mutations that are causally linked to cancer. 1,2 Improvements in disease prevention as well as diagnostic and therapeutic strategies may eventually lead to more precise, individually stratified health care. As most diseases are complex, which means that they are caused by multiple genomic factors, research is often based on large numbers of samples representing large numbers of individuals to arrive at statistically significant conclusions. In addition, genetic susceptibility alone is not sufficient to induce a complex disease; the causes also include different lifestyle and environmental factors. Therefore, to study complex diseases the interplay of all of these factors has to be considered. An efficient tool to achieve this is the creation of biobanks. Biobanks are defined as organized collections of human biological specimens comprised of cells, tissues, blood or DNA, which could be linked to clinical data and detailed individual lifestyle. Biobanks vary with respect to types and sources of samples and size, as well as research focus. Biobanks can be disease-specific or population-based, ranging from small collections to large-scale repositories. [3][4][5][6][7] Linking biological materials to personal data for enabling biobankbased genomic research raises several ethical questions that are currently debated. Th...

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“…Many countries and organizations are investing in biobanks to acquire large population datasets from which to improve characterizing of patients and their diseases. These are important resources for improving drug discovery [14,20]. Network pharmacology [21] aims to bring together these and other sophisticated international databases relevant to genetic and acquired mechanisms for disease [22], pharmacological pathways, candidate drugs, and population data describing important variants among individuals in disease patterns, drug handling and responsiveness [23,24].…”

Section: New Research Approachesmentioning

confidence: 99%