History of the largest global biobanks, ethical challenges, registration, and biological samples ownership

Abstract

Over the past few years, human DNA sampling and data collection have been improved with the aim of genetic research, clinical care, and future therapies. Since healthcare depends on modern research, it justifies access to biological samples. Therefore, the existence of organized sets of biological samples is essential. These collections are known as biobanks, gene banks, or gene libraries. There are many cases of abuse in relation to the structure of these organizations in the financial, political, individual, and social fields, and also ethical concerns, which are worth of investigation. To this end, in December 2019 a literature review was performed from the PubMed and Scopus online databases. The principal biobanking issues discussed were: (i) overview of the largest global biobanks, and (ii) top ethical biobank issues. Only a limited number of studies were reviewed in this research, but the relevant ethical issues were clarified. We worked hard to stay neutral and to express the different authors’ views on ethical issues. Differences among the writers and institutions’ views were observed, but the main ethical principles of respect are utility, justice, minimizing harm, and motivation to participate in this researches. However, the rapid growth of biobanks creates new issues that are hard to follow and discuss. Therefore, there are issues that have not yet been resolved and should be discussed in the future.