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Conflict flares over incidental genetic findings
Science ( IF 56.9 ) Pub Date : 2021-08-06 , DOI: 10.1126/science.373.6555.610
Meredith Wadman

Should people who volunteer for genomic studies be told about unrelated disease mutations that turn up in their sequence data? The decadeslong debate about such "incidental findings," which can include genes that boost risk for cancer or heart disease, flared up again last week after bioethicists at the National Institutes of Health published a study showing many participants who at first refuse those findings can change their minds. Controversially, it went on to suggest all research participants routinely be told about their genetic risks for conditions that can be prevented or treated—a change from current practice. The controversy pits some researchers who see incidental findings as an opportunity to boost the health of the millions of participants in genetics research against others, mainly bioethicists, who stress the need to respect study participants' right to reject such information. Deepening the divide, the study showed Black participants were more likely to refuse incidental results.



中文翻译:

偶然遗传发现的冲突爆发

自愿参加基因组研究的人是否应该被告知在他们的序列数据中出现的不相关的疾病突变?在美国国立卫生研究院的生物伦理学家发表的一项研究表明,许多最初拒绝这些发现的参与者可能会改变之后,关于这种“偶然发现”的长达数十年的争论,其中可能包括增加患癌症或心脏病风险的基因,上周再次爆发他们的头脑。有争议的是,它继续建议所有研究参与者定期被告知他们可以预防或治疗的疾病的遗传风险——这是对当前做法的一种改变。这场争论让一些研究人员将偶然发现视为促进数百万遗传学研究参与者健康的机会,以对抗其他人,主要是生物伦理学家,谁强调需要尊重研究参与者拒绝此类信息的权利。研究表明,黑人参与者更有可能拒绝偶然的结果,从而加深分歧。

更新日期:2021-08-05
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