Biobanks and Individual Health Related Findings: from an Obstacle to an Incentive

Abstract

Despite the benefits biobanks are expected to bring, there have recently been concerns raised that the public and private non-profit biobanks still prevailing in Europe often fail to reach their initial objectives due to a variety of reasons, including a shortage of funding and insufficient utilization of collections. The necessity to find new ways to manage biobanks has been clearly recognized and one way to do this is to follow the success of some commercial direct-to-consumer genetic testing (DTC GT) companies in the biobanking field. This paper is focused on a double role the return of individual health related findings (IHRF) detected through the biobanking activities can play in the management of biobanks. These findings can be seen as an untapped opportunity to offer health related information to biobank participants. At the same time, the IHRF policy can also serve as an additional tool that can improve biobanking governance. This paper aims to consider diverse IHRF approaches as well as to explore some key ethical concerns related to them. In particular, it reveals how different accounts of personal autonomy shape consent policies related to IHRF and emphasizes ethical controversies related to the commercial DTC GT initiatives as well as some non-profit biobanks.

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“…69 Expanding genetic testing to a greater number of people may also support efforts to improve the size and diversity of genomic databases, which would help improve analyses and better inform care. 70,71 Health systems also face several uncertainties related to expanding genetic screening systems, such as how test results could be used to inform clinical decision-making when there may be limited evidence about effective treatments, the impact of complex findings (e.g., identifying hereditary mutations associated with health conditions) for patients and families, the cost implications of follow-up testing, and determining optimal testing strategies (e.g., which genes to include and who to test). 68,72 The infrastructure capacity required to process the volume of testing and the number and expertise of health care professionals needed to interpret test results will be key considerations for health systems planning.…”