Cells, Genes and Data: Biobanks as Common Goods
DOI:
https://doi.org/10.18633/biotecnia.v26.2374Keywords:
Ethics; Bioethics; human rights; Law, Biological Specimen Banks, Community-Based Participatory Research, Tissue PreservationAbstract
Contemporary biomedical research, propelled by bioinformatics, has revolutionized the ex-ploration of the world through the collection and analysis of data from various biological materials. These advancements have given rise to ethical challenges, such as transformations in the practice of informed consent, issues related to privacy, equitable access to research benefits, and the privatization of genetic information. In this context, the governance of biobanks introduces ethical and legal tensions between liberal and communitarian perspectives. The privatization of biomaterials hinders global col-laboration and restricts the involvement of developing countries. Experiences of community-based governance in Norway, New Zealand, Argentina, and other cases suggest alternative models. Commu-nity-based governance of biobanks emerges as an ethical approach that acknowledges cultural values such as privacy, cooperation, and active community participation in decision-making.
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