Publics and biobanks: Pan-European diversity and the challenge of responsible innovation

Abstract

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.

Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review

“…Heterogeneity in terms of privacy preferences may be rooted in personal perceptions of the privacy itself. This is in keeping with previous studies on public perceptions concerning the notion of genomic privacy [53][54][55][56][57][58] that highlighted self-determination, respect, confidentiality, discretion and controllability as key influencing factors. These findings demonstrate the importance of ensuring that the privacy protection policies should not be premised on a narrow and static account of privacy, which would not suit the interests of all research participants.…”

Identifying public expectations of genetic biobanks

“…Moreover, ethical evaluation and privacy were consistently valued more than the pursuit of health benefits, suggesting that even if discoveries are found, decreases in public support for biobanks may still occur if privacy is not protected and ethical procedures are not followed. This supports previous research that finds privacy to be a key concern among Australian , European (Gaskell et al, 2013) and North American publics (e.g. Kaufman et al, 2009), and extends it further by suggesting that privacy and ethics are considered to be more important than the pursuit of healthcare benefits.…”

Public Perceptions of Biobanks in China: A Focus Group Study

“…23 In contrast, most of the Chinese study participants expressed hypothetical agreement to future research usage of their samples. In our study, we explained to participants the meaning of different types of informed consent, such as blanket consent (samples can be used for all purposes including commercial and research uses), broad consent (consent is given for medical research on all diseases), specific consent one (research can only be done for one particular disease, such as cancer or diabetes), and specific consent two (research can only be done for a particular study, e.g., a cancer study).…”