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Geneticization and Biobanking

100%
Domaradzki J.
Polish Sociological Review
|
2019
|
vol. 205
|
issue 1
103-117
EN
While biobanks constitute an indispensable source of scientific data, they also generate many concerns related to the ethical, legal and social aspects of acquiring and storing of human biological material, particularly when it comes to the matters of privacy and confidentiality of data and commercialization of research results. It is important as social perception of biobanking may have a bigger impact on the donors than real scientific achievements, while negative images of biobanks may negatively influence the readiness to donate. This, in turn, may impede the functioning of biobanks. Thus, the aim of this paper is to describe the main social anxieties related to gathering and usage of human biological material. Beginning with the concept of geneticization, the paper will tackle the most important social concerns regarding biobanking: creation of a unique genohype, geneticization of diagnostics and identity, the risk of genetic discrimination and commercialization of genetics and gene patenting.
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Zgoda dynamiczna w projekcie Chris Study

86%
Mascalzoni D.
Studia Iuridica
|
2018
|
vol. 73
43-58
PL
The subject of the article is to describe the advantages of the new type of consent used for biobanking human biological samples which is dynamic consent. This consent will be described through the prism of the Italian study, CHRIS study. The biggest advantages of this consent is the possibility of its access to specific scientific research and broad information to the patient about the purpose of using his biological sample and data. The basic assumption is that the consent given by the donor should not be of a invariable nature (it is not written on stones), but it should be dynamic.
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