遗传歧视:消费者的观点
E V Lapham1, C Kozma, J O Weiss
1Georgetown University Child Development Center, 3307 M Street, NW, Washington, DC, 20007-3935. laphamv@medlib.georgetown.edu
概括
遗传性疾病可能导致被认为是歧视,许多人担心工作或保险拒绝. 这种恐惧阻碍了基因测试和向雇主和保险公司披露遗传信息.
科学领域:
- 遗传学 是一个遗传学.
- 生物伦理学生物伦理学
- 公共卫生 公共卫生
背景情况:
- 遗传性疾病影响着许多家庭.
- 人们越来越担心基因歧视.
- 了解患者的看法至关重要.
研究的目的:
- 调查遗传性疾病患者所经历的歧视感.
- 评估遗传歧视恐惧对健康行为的影响.
- 强调需要对遗传歧视进行进一步研究.
主要方法:
- 对332名遗传支持小组成员进行调查.
- 包括101种不同的遗传疾病的家庭.
- 分析在保险和就业中感知到的歧视.
主要成果:
- 25%的信徒拒绝了人寿保险,22%的医疗保险,13%的人被拒绝了就业.
- 9%的人因担心受到歧视而拒绝进行基因测试.
- 18%的人不向保险公司提供信息,17%的人不向雇主提供信息.
结论:
- 感知到的遗传歧视是受影响个体的一个重要问题.
- 对歧视的恐惧影响了对基因测试和信息披露的决定.
- 需要进一步的研究来量化遗传歧视的程度.
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