Print Email Facebook Twitter The validity of informed consent with regard to human genetic sequencing Title The validity of informed consent with regard to human genetic sequencing Author Posner, Noah (TU Delft Electrical Engineering, Mathematics and Computer Science) Moonen, Djoshua (TU Delft Electrical Engineering, Mathematics and Computer Science) Tariq, Sameer (TU Delft Electrical Engineering, Mathematics and Computer Science) Contributor Lopez-Cantero, Pilar (mentor) Degree granting institution Delft University of Technology Date 2020-04-28 Abstract Modern societies manage an ever increasing amount of data. By miningthese data-sets, it is possible to gain understanding of problems. Through aprocess of informed consent companies have been able to sequence the genomeof large populations. Providing insight to the consumer about their familylineage and possible future risks that they could face. As a consequence ofproviding such services to consumers, companies are in the position wherethey can monetize a database of information hat they possess. The primaryissue that will be addressed is how private genetic data should be handledcorrectly. As without clear ethical guidance corporations will (un)willinglyabuse trust. The result of aiming to maximize asset value can be unethicalconduct such as selling the data to third party insurance companies. Theapparent need to process larger quantities of data in order to acquire newinformation to fill our knowledge gaps is a trade off between privacy andanonymity of the individuals within society. Creating an ethical conundrumfor companies trying to profit. This research makes a contribution to provethat certain actions when sequencing or using genetic information infringeon privacy and are not morally permissible. Providing greater clarity whentrying to decide whether a use case of personal data is ethically permissible.By reviewing modern literature that describes the ethical implications ofinformed consent and human genome sequencing the research will identifykey areas requiring further work to develop the ethics of technology in a waythat enables innovation whilst keeping society safe. Subject Informed consentTechnology managementWhole genome sequencing To reference this document use: http://resolver.tudelft.nl/uuid:e7b253d1-d186-4a27-af89-911e9f5123d9 Part of collection Student theses Document type student report Rights © 2020 Noah Posner, Djoshua Moonen, Sameer Tariq Files PDF ITVRESEARCHPAPER_FINAL.pdf 610.26 KB Close viewer /islandora/object/uuid:e7b253d1-d186-4a27-af89-911e9f5123d9/datastream/OBJ/view