دانلود رایگان مقاله لاتین چالش اخلاقی در ژنتیک substudy از سایت الزویر
عنوان فارسی مقاله:
رسیدگی به چالش های اخلاقی در ژنتیک Substudy از سازمان ملی چشم ترینیداد و توباگو (گنیست)
عنوان انگلیسی مقاله:
Addressing ethical challenges in the Genetics Substudy of the National Eye Survey of Trinidad and Tobago (GSNESTT)
سال انتشار : 2016
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مقدمه انگلیسی مقاله:
1. Introduction
It is well documented that there are a host of ethical issues associated with the conduct of human genetics and genomics research (HGR). Typically these issues are related to concerns regarding informed consent, privacy of research participants, return of results and incidental findings, data storage and data sharing (de Vries et al., 2011; Kaye et al., 2010; Wright et al., 2013). Many ethical issues associated with HGR are particularly heightened when these projects are international collaborations involving research-naïve or resource-limited settings (de Vries et al., 2011). In these settings, there is an overall concern about the lack of capacity of the host countries to conduct and lead the research themselves as well as the lack of well-trained ethics review committees and regulatory agencies (Chanda-Kapata et al., 2015; Roach, 2015). There are also corresponding concerns about the need for project designs to take into account cultural beliefs and practices of the host community, the degree of exposure (and education) of the community with respect to genetics and the true potential of the project to yield benefits to the host country (Ramsay et al., 2014; de Vries et al., 2015). Issues related to the appropriateness of informed consent models, maintaining the privacy and confidentiality of study participants, and disclosure of findings including incidental findings and obligations to family members take center stage (McGuire and Beskow, 2010; Kaye et al., 2010; Ramsay et al., 2014; de Vries et al., 2015; Chanda-Kapata et al., 2015). Additionally, given the social and economic contexts of many of the target populations there are underlying concerns about potential stigmatization and discrimination, especially since most countries lack legislation to protect against this type of harm (WHO, 2002; Foster and Sharp, 2006). Other key issues in these settings include the sharing of samples and data across different jurisdictions (Chanda-Kapata et al., 2015).
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کلمات کلیدی:
