You never call, you never write: why return of 'omic' results to research participants is both a good idea and a moral imperative
You never call, you never write: why return of 'omic' results to research participants is both a good idea and a moral imperative
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DOI：
10.2217/pme.11.62
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发表时间：
2011-11-01
影响因子：
2.3
通讯作者：
Angrist, Misha
中科院分区：
文献类型：
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作者：
Angrist, Misha
全基因组和全身研究参与者的迅速出现，有助于恢复有关遗传和其他“ OMIC”数据是否应退还给研究参与者的辩论，如果是，则在哪些情况下以及在哪些情况下以及谁的情况下恢复了辩论。 。尽管在参与者的生命和健康受到威胁的情况下，部分披露此类数据是合理的，但对于大多数研究人员和生物伦理学家来说，全面披露似乎仍然超出了苍白的范围。我认为不应该这样做，而对全面披露的反对意见近距离考虑而不是长期利益。基因组数据还给那些想要它的人，即使一项艰巨的工作以及数据的含义尚不清楚，也可以参与参与者从事科学和研究企业，并将他们定位为自己的健康和福祉的更好的管理者。
The rapid emergence of whole-genome and whole-exome sequencing of research participants has helped to revive the debate about whether genetic and other 'omic' data should be returned to research participants, and if so, which data, under what circumstances and by whom. While partial disclosure of such data has been justified in cases where participants' lives and health are threatened, full disclosure appears to remain beyond the pale for most researchers and bioethicists. I argue that it should not be and that the objections to full disclosure short-sightedly favor near-term considerations over long-term benefits. Return of genomic data to those who want it, even if a difficult undertaking and even if the meaning of the data is unclear, engages participants in science and the research enterprise, and positions them to be better stewards of their own health and wellbeing.