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.
Highlights
During the last two decades biobanks have become an integral component of health research infrastructure
There is a great variety of biobanks, generally, research biobanks can be defined as an organized long-term repository of human biological material (HBM) associated with health-related data (HD) to be shared for future research (Kauffmann & Cambon-Thomsen, 2008; CIOMS 2016)
The authors believe that individual health related findings (IHRF) could legitimately be used as an incentive to donate samples more actively and to redirect donation of samples from the direct-to-consumer genetic testing (DTC GT) companies to non-profit biobanks
Summary
During the last two decades biobanks have become an integral component of health research infrastructure. In the following we will use the term ‘biobank’ to refer to research biobanks unless otherwise specified. Biobanks can significantly contribute to the development of personalized medicine. They make high throughput scientific analyses possible by providing a large number of linked HBM and HD, enabling researchers to design and conduct studies that would otherwise be impossible. Using large numbers of biobanked HBM and HD, researchers can identify disease genes, which are hoped to lead to early, more accurate diagnoses as well as individualized therapeutic and preventive options (Liu & Pollard, 2015; Zatloukal et al, 2018)
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
