Banking on you? : the level of public awareness of biobanks in Malta (original) (raw)
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Understanding public reactions to commercialization of biobanks and use of biobank resources
Social Science & Medicine, 2016
Biobanks will be essential to facilitate the translation of genomic research into real improvements to healthcare. Biobanking is a long-term commitment, requiring public support as well as appropriate regulatory, social and ethical guidelines to realize this promise. There is a growing body of research that explores the necessary conditions to ensure public trust in biomedical research, particularly in the context of biobanking. Trust is, however, a complex relationship. More analysis of public perceptions, attitudes and reactions is required to understand the primary triggers that influence gain and loss of trust. Further, the outcomes of these analyses require detailed consideration to determine how to promote trustworthy institutions and practices. This article uses national survey data, combined with the results of a community consultation that took place in Tasmania, Australia in 2013, to analyze the specific issue of public reactions to commercialization of biobanks and their outputs. This research will enhance the ability of biobanks to respond preemptively to public concerns about commercialization by establishing and maintaining governance frameworks that are responsive to those concerns. The results reveal that it is possible to counter the 'natural prejudice' that many people have against commercialization through independent governance of biobank resources and transparency with regard to commercial involvement. Indeed, most participants agreed that they would rather have a biobank with commercial involvement than none at all. This analysis provides nuanced conclusions about public reactions towards commercialization and equips researchers and biobank operators with data on which to base policies and make governance decisions in order to tackle participant concerns respectfully and responsively.
European Journal of Human Genetics, 2021
Various forms of private investment are considered necessary for the sustainability of biobanks, yet pose significant challenges to public trust. To manage this tension, it is vital to identify the concerns of relevant stakeholders to ensure effective and acceptable policy and practice. This research examines the aspects of commercialisation that are of most concern to the Australian public (n = 800) and patients who had donated their tissue to two large disease specific (cancer) public biobanks (n = 564). Overall, we found a commercialisation effect (higher support for public relative to private) in relation to funding, research location and access to stored biospecimens. The effect was strongest for research locations and access compared to funding. A latent class analysis revealed the pattern of concern differed, with the majority (34.1%) opposing all aspects of commercialisation, a minority supporting all (15.7%), one quarter (26.8%) opposing some (sharing and selling tissue) but not others (research locations and funding), and a group who were unsure about most aspects but opposed selling tissue (23.5%). Patient donors were found to be more accepting of and unsure about most aspects of commercialisation. Members of the (general) public who were motivated to participate in biobanking were more likely to oppose some aspects while supporting others, while those who indicated they would not donate to a biobank were more likely to oppose all aspects of commercialisation. The results suggest that approaches to policy, engagement and awareness raising need to be tailored for different publics and patient groups to increase participation.
Publics and biobanks: Pan-European diversity and the challenge of responsible innovation
This article examines public perceptions of biobanks in Europe using a multi-method approach combining quantitative and qualitative data. It is shown that public support for biobanks in Europe is variable and dependent on a range of interconnected factors: people's engagement with biobanks; concerns about privacy and data security, and trust in the socio-political system, key actors and institutions involved in biobanks. We argue that the biobank community needs to acknowledge the impact of these factors if they are to successfully develop and integrate biobanks at a pan-European level.
Stakeholders’ Attitudes towards Biobanks in Malaysia
Akademika, 2017
The Malaysian Cabinet's approval of MyCohort in 2005 was seen as the crucial step toward the country having its very first biobank to improve the prevention, diagnosis and treatment of diseases. Past studies have shown that public attitudes towards biobanking depend heavily upon several factors including public engagement with biobanks, trust in key actors, privacy and data security, perceived benefit, altruism and certain demographic variables. The objective of this paper is to assess and compare the attitude levels of the Malaysian stakeholders' towards the application of biobanks across education levels and religion. A survey was carried out on 509 adult respondents in the Klang Valley region of Malaysia. Results of the study have substantiated that the Malaysian stakeholders' attitudes towards biobank were classified as high. Despite their high levels of perceived benefit and religious acceptance, they also expressed moderately high levels of concern when it comes to issues of data and specimen protection; this suggests that the Malaysian stakeholders also tend to be critical upon expressing their views towards a complex system such as biobanks. One-way MANOVA initially has detected a significant difference of attitude towards biobanks across stakeholder groups, education level and religion. Series of univariate analysis following the MANOVA, as well as Post Hoc analysis, also confirm significant difference of attitude existing across stakeholders; however, no significant differences were detected across education level and religion. The research finding serves as a useful benchmark for scientists and government regulators to understand public attitudes to biobanks before they are set into use.
Factors influencing public participation in biobanking
European Journal of Human Genetics, 2014
A diversity of public participation in biobanking is a highlight for the success of biobanks. It was previously reported that only two-thirds of Jordanians expressed interest in biobanking. To promote public involvement in a biobank, it is imperative to determine the aspects that influence the decision-making to participate. On the basis of a national survey involving 3196 respondents, the influence of 13 biobanking factors was assessed, including returning research results, privacy, freedom of choice, uncertainties about research, monetary and health considerations, and personal belief. Perception toward each factor was also correlated with willingness to participate in a biobank. A considerable number of respondents indicated returning research results as influential in their decision to become biobank donors. Interestingly, whereas the positive perception of availability of general results (39%) correlated with willingness to donate for biobanking, the negative view of unavailability of individualized results (47%) did not correlate with unwillingness. Religious permission of sample donation for research had the strongest positive influence (61%) and the highest correlation to participate among positively perceived factors. Unspecified research was highly indicated as a negative factor (45%), but did not correlate with unwillingness to become a biobank donor, whereas allowed withdrawal had a positive effect (31%) and correlation to contribute to biobanking. The negative perception of accessing medical information (9.5%) and re-contact (8.5%) had the strongest correlation with unwillingness to donate to a biobank. These results may provide an insight into how to formulate strategies to promote public participation in biomedical research and biobanking.
UK Biobank: a model for public engagement?
Genomics, Society and Policy, 2005
Whilst in other applications of genetic technology the public debate has begun only when a piece of research has been completed, public consultations on biobanking began in 2000, before the funding for UK Biobank was even agreed, and have continued throughout its development. UK Biobank has obvious attractions for the British public. It is being set up specifically as a resource for research into common diseases that are relevant to everyone, rather than rare genetic disorders unknown to most. The only diseases mentioned on the 'about UK Biobank' web page are cancer, heart disease, diabetes and Alzheimer's disease 1 . The public are encouraged to be involved by the promise of 'a better life for our children and grandchildren' and 'enormous potential to result in improvements to health of the UK population' through the National Health Service. 2
Public’s attitudes on participation in a biobank for research: an Italian survey
BMC Medical Ethics, 2014
Background: The creation of biobanks depends upon people's willingness to donate their samples for research purposes and to agree to sample storage. Moreover, biobanks are a public good that requires active participation by all interested stakeholders at every stage of development. Therefore, knowing public's attitudes towards participation in a biobank and biobank management is important and deserves investigation. Method: A survey was conducted among family members of patients attending the outpatient department of our institute for a geriatric or neurological visit, documenting their willingness to participate in a biobank and their views on the legal-ethical aspects of biobank management. Information regarding subjects' attitudes on biomedical research in general and genetic research in particular was also collected. Participants' data on biobanks were compared with data previously collected from the Italian ethics committees (ECs) to evaluate the extent to which lay people and ethics committees share views and concerns regarding biobanks. Results: One hundred forty-five subjects took part in the survey. The willingness to give biological samples for the constitution of a biobank set up for research purposes was declared by 86% of subjects and was modulated by subjects' education. People in favour of providing biological samples for a biobank expressed a more positive view on biomedical research than did people who were not in favour; attitude towards genetic research in dementia was the strongest predictor of participation. Different from ECs that prefer specific consent (52%) and do not choose the option of broad consent (8%) for samples collection in a biobank, participants show a clear preference for broad consent (57%), followed by partially restricted consent (16%), specific consent (15%), and multi-layered consent (12%). Almost all of the subjects available to contribute to a biobank desire to receive both individual research results and research results of general value, while around fifty per cent of ECs require results communication. Conclusion: Family members showed willingness to participate in a biobank for research and expressed a view on the ethical aspects of a biobank management that differ on several issues from the Italian ECs' opinion. Laypersons' views should be taken into account in developing biobank regulations.