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JIWEI CI 《Journal of Political Philosophy》2013,21(2):125-150
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D P Barash 《Psychological reports》1972,31(2):577-578
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Individual,family, and societal dimensions of genetic discrimination: A case study analysis 总被引:2,自引:0,他引:2
Geller LN Alper JS Billings PR Barash CI Beckwith J Natowicz MR 《Science and engineering ethics》1996,2(1):71-88
Background. As the development and use of genetic tests have increased, so have concerns regarding the uses of genetic information. Genetic
discrimination, the differential treatment of individuals based on real or perceived differences in their genomes, is a recently
described form of discrimination. The range and significance of experiences associated with this form of discrimination are
not yet well known and are investigated in this study.
Methods. Individuals at-risk to develop a genetic condition and parents of children with specific genetic conditions were surveyed
by questionnaire for reports of genetic discrimination. A total of 27,790 questionnaires were sent out by mail. Of 917 responses
received, 206 were followed up with telephone interviews. The responses were analyzed regarding circumstances of the alleged
discrimination, the institutions involved, issues relating to the redress of grievances, and strategies to avoid discrimination.
Results. A number of institutions were reported to have engaged in genetic discrimination including health and life insurance companies,
health care providers, blood banks, adoption agencies, the military, and schools. The alleged instances of discrimination
were against individuals who were asymptomatic and sometimes impacted on other asymptomatic relatives. Few surveyed respondents
knew of the existence of institutions such as state insurance commissions or the Medical Information Bureau, Inc., which may
play roles in redress of grievances or correction of misinformation.
Conclusions. Genetic discrimination is variable in form and cause and can have marked consequences for individuals experiencing discrimination
and their relatives. The presence of abnormal genes in all individuals makes each person a potential victim of this type of
discrimination. The increasing development and utilization of genetic tests will likely result in increased genetic discrimination
in the absence of contravening measures.
All authors contributed equally to this work.
This work was supported by a grant from the U.S. Department of Energy and funding from the Department of Mental Retardation
of the Commonwealth of Massachusetts. 相似文献
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