"Use it or lose it" as an alternative approach to protect genetic privacy in personalized medicine.
"Use it or lose it" as an alternative approach to protect genetic privacy in personalized medicine.
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DOI:
10.1016/j.urolonc.2013.09.016
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发表时间:
2014-02
期刊:
影响因子:
--
通讯作者:
Pyeritz RE
中科院分区:
文献类型:
--
作者:
Wagner JK;Mozersky JT;Pyeritz RE
Scholars have spent considerable time discussing the challenges and importance of protecting privacy in the context of genomic medicine [see, eg, 1]. There is a great deal of research and clinical potential to be gained from storing massive amounts of genotypic data but this must be weighed against the possible risks to individual privacy, a quandary some have described as “privacy versus the gold-mine”[2]. DNA is a unique identifier and has the potential to reveal medical (and non-medical) information about individuals and by consequence their family members. For instance, genomic data could reveal undesired presymptomatic health information, non-paternity, or even be used to frame a suspect at a crime scene [3]. Access to, or disclosure of, this information, whether authorized or not, could lead to various forms of misuse and discrimination (eg employment, insurance, and financial). The advent of whole genome sequencing has compounded privacy concerns because it could reveal entirely unanticipated information particularly as our ability to (re) interpret genomic sequence data is continually improving [1; see also 4-6].In addition, genomic information could have consequences beyond the individual from whom it was derived, including both lineal relatives (eg, children and grandchildren) and collateral relatives (eg, siblings, cousins, nieces, and nephews) who may be unaware that the individual is undergoing sequencing. Intra-familial privacy issues are complex and vary from one family to another; however, in the clinical context physicians typically give precedence to individual patient privacy and autonomy over the interests of a patient’s
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影响因子:
2.3
作者:
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通讯作者:
Angrist, Misha
DOI:
10.1038/gim.2012.157
发表时间:
2013-04
期刊:
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子:
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作者:
通讯作者:
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影响因子:
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作者:
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通讯作者:
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DOI:
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发表时间:
2012-07-24
影响因子:
11.1
作者:
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通讯作者:
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影响因子:
120.7
作者:
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通讯作者:
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