Hukuki ve Etik Yönleri ile Biyotıp Araştırmalarında Biyobankalar

Abstract

Biobanks are the organizations where biological materials and associated personal information are collected, stored, processed and distributed in a particular systematic. Biobanks provide opportunity to easily obtain enough amount of samples to make a wide range of genetic research studies and reproduce them. The development of technical facilities in storage of biological materials as well as utulizing digital medium in processing biological data and innovations in the computer technology have made collection, monitoring and analysis of the data samples easier. Efficient data flow between the biobanks is a factor that facilitates multifocal scientific research. Therefore, biobanks in both national and international level are aimed to function in accordance with specific standards. As a result of rapid development and increasingly complex structure of biobanking we have encountered in new ethical challenges besides the main ethical issues. The main ethical problems related with biobanking can be listed as; informed consent, privacy, share of research findings, identification of the donor, public trust, protection of minors, commercialization, role of ethic committees, international data sharing, property rights of samples and share of benefits. How to define biological property is important in terms of solving commercialization problems. Since participant's consent also covers for future research, different types of consents have emerged for biobanks rather than traditional informed consent. In this case, the issue of autonomy is tried to be balanced by the ethics committees. For the sake of privacy, the samples are anonimized or different techniques are utulized. There are no specific legal regulations in this field in Turkey yet. Both international agreements and directives of the European Union provide a convenient framework for enactment. A biobank law, which is in accordance with those standards, is crucial in protecting the rights of both participants and researchers, as well as developing biobanking in Turkey.