Biobanking for genomic research : public awareness and stakeholders’ attitudes towards risks and benefits in Malta

Abstract

Participant motivation is essential for the success of biobanking for genomic research. The benefits which emerge from the process play an important role in this respect, however, issues of risk and trust also have a direct impact. This mixed-methods study includes preliminary quantitative research on the level of local public awareness of biobanking for genomic research, as well as in-depth qualitative analysis of the attitudes, beliefs and perspectives of the key stakeholders towards the donation of biospecimens to a biobank for research. A survey questionnaire was administered amongst a sample of 387 respondents stratified on the basis of gender and educational background. The key result is that the significant majority of the local population does not know what a ‘biobank’ is, with a mere 4.9% (19 participants) of the sample mentioning the process of storing biospecimens for the purpose of biomedical research at some point during the survey, although only 2.3% (9 participants) knew that the premises which serves this purpose is called a ‘biobank’. These findings were used to inform the production of audio-visual tools used during data collection for the qualitative exploration of stakeholders’ attitudes towards risk and benefits of biobanking for genomic research. The data for this qualitative phase of the study were collected through focus group sessions with individuals with existing medical conditions (henceforth referred to as patients), parents of patients, and the general public, as well as in-depth expert interviews with the researchers, the biobank manager and representatives of a local patient support group. Findings show that the perceptions of both the general public and patients towards the medical system at large, and even towards the wider social system or the establishment, have a direct impact on their concerns about donating their biospecimens for genomic research and biobanking, yet this does not necessarily impact their willingness to participate. Irrespective of the level of concern conveyed by the participants, the motivation to participate in genomic research studies remained consistent, as the perceived benefits overruled the potential negative repercussions. Moreover, the patients’ focus groups demonstrated more enthusiasm towards participation when compared to their nonpatient counterparts. Whilst non-patients are motivated by a need for self-fulfilment, patients are motivated by a more basic need for enhancing personal health or that of future generations. Findings highlight a form of stratification in reflexivity based on health status. It is revealed that the discrepancy in motivation levels is linked to a disparity in perceptions towards risk, with patients being significantly less preoccupied with issues such as privacy risk, and more concerned about research not reaching its full potential. All stakeholder groups (experts and focus group participants) expressed the desire to attain some level of power and control over how the data is processed, particularly with regards to specific issues such as consenting, data sharing and incidental findings.