دانلود رایگان مقاله لاتین مسائل اخلاقی در تعیین توالی ژنوم از سایت الزویر


عنوان فارسی مقاله:

مسائل اخلاقی در تعیین توالی ژنوم مصرف کننده: استفاده از نمونه ها و اطلاعات مصرف کنندگان


عنوان انگلیسی مقاله:

Ethical issues in consumer genome sequencing: Use of consumers' samples and data


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مقدمه انگلیسی مقاله:

1. Introduction

Direct-to-consumer (DTC) genetic testing (GT) companies operating outside of the traditional healthcare system have attracted numerous critiques of their practices over the last decade (Kalokairinou et al., 2014). Beyond questioning the clinical validity and utility of the tests, the appropriateness of medical supervision and genetic counselling, some of the concerns centre on the storage and use of consumers' samples and data. These include a number of inter-related issues such as what consumers are told (e.g., during the consent process) about storage and use of samples and data; proprietary claims stemming from secondary uses of sample and data; as well as the coupling of companies' genetic testing offer with research activities. Indeed, an earlier explorative study of DTC GT companies has shown that for some companies the consent to participation in research may not be adequate; it questioned whether the information provided by the companies about their research activities was clear and explicit enough for consumers to understand what they were agreeing to (Howard et al., 2010). Furthermore, it highlighted that such ambiguous presentations of information for testing and research activities blur the lines between consumers and research participants, undermine the informed choice of consumers and may potentially undermine public trust in research in general (Howard et al., 2015, 2010). Recent advancements in sequencing technologies have resulted in a significant decrease in the price of whole-exome and whole-genome sequencing (WES, WGS), which has allowed for a greater use of these approaches in both the clinical and research domains causing a shift in testing approach from analysing one or a few genetic variants to the study of an entire exome/genome sequence. WES/WGS generates an unprecedented amount of sensitive health-related genomic data useful in healthcare management and powerful in the research setting (Rabbani et al., 2014). While much of the discussion surrounding the ethical, legal and social implications (ELSI) of these high-throughput approaches has been focused on these settings, much less attention has been paid to commercial companies offering sequencing services DTC.



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کلمات کلیدی:

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