Biobank confidentiality is a global concern. To ameliorate the risks associated with biobank confidentiality, research biobanks employ a variety of precautions, including coding and access security systems. Biobank confidentiality extends beyond the information provided to a biobank for storage but also to subsequent research results. Alahmad et al. (2016)1 surveyed 200 Saudi individuals to obtain their opinions on the importance of medical and genetic confidentiality.
Alahmad et al. surveyed five groups of participants, referring specifically to the research biobank of the King Abdullah International Medical Research Center in Saudi Arabia: medical students, physicians, researchers (employees), donors and laypeople (visitors). They conducted the survey in Arabic for donors and visitors, and in English for the physicians, researchers and medical students. The survey asked questions in the following areas:
- The participants’ attitudes toward the importance of confidentiality in a research biobank
- Their views on the accessibility of medical and genetic information by different people from the biobank
- Their views about providing research results to others
- Under what circumstances they believed the biobank is justified in disclosing confidential medical information to third parties
More than 90% of participants agreed that medical information in the biobank should be viewed as confidential, but only two-thirds agreed that the Saudi Biobank protected confidentiality well. While there was agreement (80%) between participants regarding giving access to biobank data to researchers and clinicians, there was significantly less agreement when asked whether they felt that government agencies should be given access to the data. The investigators found that there were differences among respondents as to which family members could have genetic information disclosed to them. Most agreed on disclosure to both parents, followed by sons and daughters. However, less than half of them agreed that access should be given to brothers and sisters. Most respondents agreed that infectious and genetic diseases are justifiable reasons to breach confidentiality.
Alahmad et al. had findings that are consistent with published literature from research in other countries. However, they note that there are too few surveys in the Middle East about biobank confidentiality, particularly in the Saudi context, to show cultural and religious differences compared with the western world.
1. Alahmad, G., et al. (2016) “Attitudes toward medical and genetic confidentiality in the Saudi research biobank: An exploratory survey,” International Journal of Medical Informatics, 87 (pp. 84–90).