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[빅데이터] 영국 유전자 관련 감시 시민단체 : GeneWatch

영국 유전자 관련 감시 시민단체 : GeneWatch


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  • Human Genetics

    Human Genetics section


    출처 : http://www.genewatch.org/sub-396421

    Successive governments have believed lobbyists’ claims that one day everyone would have a complete reading of their genetic make-up and the diseases they would get will be predicted and prevented. Lifestyle advice, medication and perhaps the food you eat would be tailored to personalised risk assessments, based on your genetic make-up and other information. Read why such genetic horoscopes are a dangerous myth.


    The Genes and Marketing section highlights the poor predictive value of genetic tests which claim to identify people’s risk of common diseases. The Genes and Health section discusses why there are reasons to doubt that these predictions will improve significantly in future, and highlights the role of conflicts of interest in promoting this idea.


    The Genes in the NHS section describes plans to build a vast genetic database using electronic medical records linked to DNA in the NHS, including proposals to use babies’ blood spots to do this.


    Britain’s police DNA database contains the largest proportion of any population in the world and other genetic databases are planned for medical research. These databases raise important issues about privacy and rights. The Privacy and Discrimination section highlights these issues, including attempts to create a back-door DNA database in the NHS by data-sharing of stored DNA and medical records with companies, the police and governments without consent.


    GeneWatch would like to see:



    • Regulation of genetic testing, so that it is used only in situations where it is of benefit to health and ethically justified.
    • Legal safeguards to prevent genetic discrimination and erosion of privacy and civil rights.
    • Public involvement in setting the health research agenda and restrictions on commercial conflicts of interest (including an end to the patenting of genes).


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