Research On Informed Consent Of Genetic Data In The Big Data Era

Large-scale personal data collection has become increasingly pervasive in the era of big data.For instance,daily access to the internet browser will inevitably bring about personalized commercials,banks collect the transaction trails of their customers to predict their shopping habits and then work with companies to influence future choices;There are also reports about how personal data of citizens are transferred illegally to pursue monetary gain.The most unsettling fact is,there will be dire consequences if certain facilities collect,store and share the critical genetic data without informed consent from the citizens.Besides,based on the reports of illegal trade of personal data and insufficient coverage and supervision,it's reasonable to infer that unlawful use of genetic data is already happening.This thesis will first look into medical environment,business settings and criminal procedures of genetic data collection,store and utility.Based on the risk the genetic data faces in the three scenarios,the collection has evolved into high efficiency from the traditional method,this thesis has reasons to believe the era of genetic big data has arrived and genetic data use without informed consent are facing an abusive trend.Next,the thesis explores genetic data use in research,commercial environment and criminal cases,presents a whole picture of data abuse as the inevitable outcome of supervision void and informed consent absence.After that,the thesis will set forth to establish the legal basis of informed consent,analysis and argue against several ideas that deny legal rights of informed consent,e.g.abandoned specimen,de-identified data,hindering data accessibility,and restrains on scientific progress.At the final stage,the thesis will examine the formal expression of informed consent,debate over its possible ways of implantations;weigh over mechanisms such as pre-informed consent and post-informed consent,informed consent on certain stages and informed consent as a package.The thesis also advocates the establishment of the third-party review to safeguard its execution.Ensuring the proper and effective use of informed consent will maximally protect genetic rights of the citizens,regulate the collection and utility of genetic data in the big data era,and eventually make sure the genetic data will be made optimal usage in the scientific ground.