PROTECTION OF DATA FROM A BIOLOGICAL GROUP: NEW CHALLENGES FOR PRIVACY LAW
References: 5th International Multidisciplinary Scientific Conference on Social Sciences and Arts SGEM 2018, www.sgemvienna.org, SGEM2018 Vienna ART Conference Proceedings, ISBN 978-619-7408-30-0 / ISSN 2367-5659, 19 - 21 March, 2018, Vol. 5, Issue 1.1; 261-268 pp, DOI: 10.5593/sgemsocial2018H/11/S02.034
The study focuses on the importance of balancing the need to share and use genetic sequences and the need to protect the privacy of biological groups who could be harmed if the genetic data of a group member were made public. Many medical discoveries are based on the use of human cells which are donated by volunteers. But the will of the donors could be in contrast with the will of their relatives. The aim of the study is to determine what the preeminent interest between the desire of the donor to help the research development and the privacy of his or her relatives is.
Since scientific research has no boundaries, it is indispensable to adopt uniform regulations and to rethink models of informed consent for the use of genetic data, in such a way as to allow the relatives of the sample donor to participate in the goals of the research. Donation of a biological sample for research purposes is an expression of the donor’s right to self-determination, and as such is worthy of protection. But when the genetic information obtained from the donated sample is made available to third parties, what are the rights of the members of the donor’s biological group? The new European Regulations about Data Protection do not provide specific indications, but it is possible to identify a regulatory framework for genetic data protection. The overall goal of the study is to demonstrate that an important role could be played by research groups in the form of self-regulation including guidelines or best practices.
Keywords: genetic data, privacy, data protection, informed consent, human sample donation
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