Public Attitudes toward Biobanking of Human Biological Material for Research Purposes: A Literature Review

Domaradzki, Jan; Pawlikowski, Jakub

doi:10.3390/ijerph16122209

Cited by 75 publications

(157 citation statements)

References 66 publications

(382 reference statements)

Supporting

Mentioning

134

Contrasting

Unclassified

Order By: Relevance

“…There is a growing literature on the role of public involvement in the ethical, legal and policy implications of biobanking. [10][11][12][13][14][15] In 2019, Nunn et al 6 conducted a global review of involvement in genomic research, finding that only one third of studies involved the public and concluding that more involvement would have intrinsic value for future studies. Yet, as Nunn et al note, there are few published accounts of the impact that public involvement has had on the governance, design and conduct of biobanks, 16 or on the public who are involved.…”

Section: The Impact Of Public Involvement In Biobanksmentioning

confidence: 99%

The reported impact of public involvement in biobanks: A scoping review

Puerta

Kendall

Davies

et al. 2020

Health Expectations

View full text Add to dashboard Cite

Background Biobanks increasingly employ public involvement and engagement strategies, though few studies have explored their impact. This review aims to (a) investigate how the impact of public involvement in biobanks is reported and conceptualized by study authors; in order to (b) suggest how the research community might re‐conceptualize the impact of public involvement in biobanks. Methods A systematic literature search of three electronic databases and the INVOLVE Evidence Library in January 2019. Studies commenting on the impact of public involvement in a biobank were included, and a narrative review was conducted. Results and discussion Forty‐one studies covering thirty‐one biobanks were included, with varying degrees of public involvement. Impact was categorized according to where it was seen: ‘the biobank’, ‘people involved’ and ‘the wider research community’. Most studies reported involvement in a ‘functional’ way, in relation to improved rates of participation in the biobank. Broader forms of impact were reported but were vaguely defined and measured. This review highlights a lack of clarity of purpose and varied researcher conceptualizations of involvement. We pose three areas for further research and consideration by biobank researchers and public involvement practitioners. Conclusions Functional approaches to public involvement in biobanking limit impact. This conceptualization of involvement emerges from an entrenched technical understanding that ignores its political nature, complicated by long‐standing disagreement about the values of public involvement. This study urges a re‐imagination of impact, re‐conceptualized as a two‐way learning process. More support will help researchers and members of the public to undergo such reflective exercises.

show abstract

Section: The Impact Of Public Involvement In Biobanksmentioning

confidence: 99%

The reported impact of public involvement in biobanks: A scoping review

Puerta

Kendall

Davies

et al. 2020

Health Expectations

View full text Add to dashboard Cite

show abstract

“…In our study, only 63.4% of the respondents expressed their willingness to participate. While, in some previous studies, respondents showed a more positive attitude towards donating biospecimens (64%-90%) [20,21]. The reason was we thought may due to their in-invasive collecting methods described in their article in a biobank.…”

Section: Discussionmentioning

confidence: 59%

Biospecimen Donation in Biobank Construction: Aspects Affecting Donation and Publics’ Concern

Zhou

Zhang

et al. 2019

Preprint

View full text Add to dashboard Cite

Background A biobank is a storage facility which stores sample mainly for biological or medical researches. Biospecimen collection is the kind of work essential in the building of biobank. However, we found the collection works had the difficulties in the proceeding because of the low anticipation rate. Methods We here conducted a questionnaire including several questions covered several aspects in order to find out people’s attitude towards biospecimen donation. The questionnaire had 20 questions mainly focused on overall publics’ participation rates, matters that influence their participation and major publics’ concerns in biospecimen donation. Results In our survey, 1477 from 2200 distributed questionnaires were responded, and electronic questionnaires showed the highest response rate of 49.9%. In all respondents, 936 showed willingness in participation, providing a percentage of 63.4%. We found that most respondents lack the knowledge of biospecimen donation and biobanking but still have a positive attitude towards biospecimen donation. Several factors, including family disease history( p <0.05), previous donation history ( p <0.01), the knowledge of biospecimen donation ( p <0.01), the knowledge of biospecimen donation conception ( p <0.01) were closely linked to donation willingness. Among those factors, family disease history, brief knowledge about biospecimen donation were independent factors affecting donation willingness. The reverse health effects and privacy leakage were major concerns among the majority of respondents. Primary reasons affected willingness, or unwillingness donation were their benefic to public interests and privacy concerns. In summary, this survey we mainly discussed factors affecting publics’ willingness and issues people concerned most in biospecimen donation of a biobank. Conclusions Most respondents hold positive attitudes towards biospecimen donation but lack relevant knowledges. Several factors influenced donation willingness probably caused by those deficiency knowledge. Even though faced this challenge, responders’ merits of altruistic behavior may contribute to the act of donation. In addition, information leakage and health impairment remained the domain factors prevented their participation. Further works are required to eliminate those undesirable elements restrained biospecimen donation by the well biobank knowledge popularization and detailed pre-donation information exchange .

show abstract

“…Some degree of lack of knowledge regarding study participants' perspectives and opinions on biobanks is well known among stakeholders such as scientists, researchers and biobanks' sponsors (11).…”

Section: Discussionmentioning

confidence: 99%

Could the disclosure of individual health results hamper biobanking? Findings from a survey on potential donors screened for depression

Toccaceli

Fagnani

Gigantesco

et al. 2019

Preprint

View full text Add to dashboard Cite

Background: Research based on the use of biological material stored in biobanks together with health information and clinical data may produce new strategies for prevention, early detection, accurate diagnoses, and tailored treatments. A postal survey on the knowledge and attitude towards research biobanking was conducted among a sample of individuals previously recruited in urban primary care services in Rome (Italy), and screened for major depressive disorder (MDD) (SET-DEP project). The present study aims at exploring the attitude of these participants towards the potential future disclosure of individual health results when participating in research biobanking. Methods: The survey was conducted with a validated questionnaire on the knowledge and preferences about donation for research biobanks; self-perceived health was collected and The Satisfaction With Life Scale was administered. Means and percentages were compared across groups by using t test or ANOVA and chi-square test respectively. Results: Out of 416 subjects who underwent the screening for MDD, 51 (12.2%) subjects responded to the mail questionnaire. The large majority of respondents (42 subjects, >82%) declared they would agree to the potential use of their biological samples for biomedical research purposes only if no feedback results regarding health or predisposition to diseases would be given to them. The agreement towards research biobanking was not associated with satisfaction with life (ANOVA: p=0.82) or self-perceived health (chi-square test: p=0.98). Conclusions: It is widely recognized that willingness to donate diminishes when the research scenario raises moral, religious or political concerns. Nevertheless, other emerging concerns, more deeply linked to an individual psychosocial sphere, may also affect research biobanking. Our findings show a prevailing preference opposing the disclosure of individual health results not only among MDD positive screened but also – and even more – among MDD negative screened participants. This suggests that there might be relevant personal factors influencing people’s preferences with respect to the feedback of individual results in the case of psychiatric disorders such as depression. Moreover, these preferences do not seem to depend on the perceived heath status or subjective wellbeing of respondents.

show abstract

Public Attitudes toward Biobanking of Human Biological Material for Research Purposes: A Literature Review

Cited by 75 publications

References 66 publications

The reported impact of public involvement in biobanks: A scoping review

The reported impact of public involvement in biobanks: A scoping review

Biospecimen Donation in Biobank Construction: Aspects Affecting Donation and Publics’ Concern

Could the disclosure of individual health results hamper biobanking? Findings from a survey on potential donors screened for depression

Contact Info

Product

Resources

About