The policies of ethics committees in the management of biobanks used for research: an Italian survey

Porteri, Corinna; Togni, Elena; Pasqualetti, Patrizio

doi:10.1038/ejhg.2013.107

Cited by 9 publications

(5 citation statements)

References 20 publications

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“…In the last 10 years, around 60 biobank-related surveys have been conducted and published all over the world, with less than 20 being related to European biobanks. In Italy, few studies have been conducted in the last 10 years [ 16 , 36 , 37 ], with none being published in the last 3 years. Of the three studies conducted in Italy, just one [ 16 ], published in 2017, investigated the willingness to donate and the attitude towards biobanking among university students.…”

Section: Discussionmentioning

confidence: 99%

Public Attitude towards Biobanking: An Italian University Survey

Aleni

Rinaldi

Bettio

et al. 2022

IJERPH

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Biobanks have established a critical role in biomedical research by collecting, preserving, organizing, and disseminating biospecimens and related health data, contributing to precision medicine development. Participation in biobanks is influenced by several factors, such as trust in institutions and scientists, knowledge about biobanking, and the consideration of benefit sharing. Understanding public attitudes, fears, and concerns toward biobanking is fundamental to designing targeted interventions to increase trust towards biobanks. The aim of our study was to investigate the level of knowledge and perception of biobanks in students and personnel of the University of Piemonte Orientale. An online questionnaire was designed and administered via e-mail. A total of 17,758 UPO personnel and students were invited to participate in the survey, and 1521 (9.3%) subjects completed the survey. The results showed that 65.0% of the participants were aware of the term “biobank” and knew what the activity of a biobank was, and 76.3% of subjects were willing to provide biospecimens to a research biobank, whereas 67.3% of the respondents were willing to contribute, in addition to biospecimens, their health and lifestyle data. Concerns were raised about the confidentiality of the information (25.6%) and the commercial use of the samples (25.0%). In conclusion, participants were aware of the role that biobanks play in research and were eager to participate for the sake of furthering scientific research. Still, several concerns need to be addressed regarding the confidentiality of the data along with the commercial use of the samples and associated data.

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Section: Discussionmentioning

confidence: 99%

Public Attitude towards Biobanking: An Italian University Survey

Aleni

Rinaldi

Bettio

et al. 2022

IJERPH

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“…Forty-eight ethics committees (ECs) took part in that study. Except for the questions specifically related to ECs’ activities, that were omitted, the questions used in this survey were the same questions used in the previous study [ 8 ]. Only people expressing their willingness to take part in a hypothetical biobank completed the questionnaire on the ethical aspects of the biobank management, which was organised in the following areas: informed consent (IC) and information for the subject; protection of confidentiality; ownership of samples and data and intellectual propriety rights (IPRs); communication of research results; subjects’ remuneration and benefit sharing; access/transfer of biological materials and related data; and length of storage.…”

Section: Methodsmentioning

confidence: 99%

Public’s attitudes on participation in a biobank for research: an Italian survey

et al. 2014

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BackgroundThe 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.MethodA 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.ResultsOne 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.ConclusionFamily 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.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-6939-15-81) contains supplementary material, which is available to authorized users.

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“…Both types of consent offer the most degree of autonomy and a high level of control compared with broad consent. In general, other studies have shown a lack of consensus on the preferred type of consent [48,51], while others have shown a preference for broad consent [52]. The preference for broad consent among Australians was in uenced by whether the biobank is in Australia or overseas [43].…”

Section: Discussionmentioning

confidence: 97%

Perspectives, Attitudes, and Willingness to Participate Toward Biobank Research of the Public in the Arab Region

Ahram

Abdelgawad

ElHafeez

et al. 2022

Preprint

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Population-based genomics studies have proven successful in identifying genetic variants associated with diseases. High-quality biospecimens linked with informative health data have made such studies possible. However, the success of biobanks depends on the willingness of the public to participate in biobank research. We aimed to explore the views of the Arabic public regarding their willingness to participate in biobank research. We used a validated questionnaire to assess the public's perceptions, attitudes, and willingness to participate in biobank research in four Arab low-middle income countries: Egypt, Jordan, Morocco, and Sudan. We recruited 967 participants in this survey. More than half of the respondents did not have prior awareness of biobanks. Although most aspects associated with biobanks had little influence on respondents’ decision to participate in biobank research, two appeared to be pivotal. These included the prospects of sharing biospecimens and medical information with international researchers and the possibility that biobanking research would improve the personal health of donors. Participants expressed concerns regarding the privacy of medical information when shared with physicians and researchers and many did not trust individuals in charge of biobanks. Their willingness to donate biospecimens and medical information was less than 10%. Predictors of willingness to participate in biobank research included previous involvement in research and positive attitudes toward biobanks, Perceptions of biobanks had a negative influence on willingness to participate in biobank research. We conclude there should be additional efforts to raise public awareness, enhance perceptions, and engage the public in all aspects of biobanking research.

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The policies of ethics committees in the management of biobanks used for research: an Italian survey

Cited by 9 publications

References 20 publications

Public Attitude towards Biobanking: An Italian University Survey

Public Attitude towards Biobanking: An Italian University Survey

Public’s attitudes on participation in a biobank for research: an Italian survey

Perspectives, Attitudes, and Willingness to Participate Toward Biobank Research of the Public in the Arab Region

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