Stability of Attitudes to the Ethical Issues Raised by the Return of Incidental Genomic Research Findings in Children: A Follow-Up Study
Stability of Attitudes to the Ethical Issues Raised by the Return of Incidental Genomic Research Findings in Children: A Follow-Up Study
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DOI：
10.1159/000439244
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发表时间：
2015-01-01
影响因子：
1.7
通讯作者：
McMaster, Christopher R.
中科院分区：
文献类型：
--
作者：
Fernandez, Conrad V.;O'Connell, Colleen;McMaster, Christopher R.
目的：我们探讨父母对基因组研究成果回归所引发的伦理问题态度的稳定性。方法：在基线调查18个月后，向大型基因组研究联盟的参与者邮寄了一份19项问卷。我们描述了父母对(a)共享基因组研究成果，(b)支持儿童参与基因组研究，(c)研究人员的责任，以及(d)对大家庭的责任的态度的稳定性。我们还探讨了他们在接受结果方面的经验。结果：在170名原始参与者中，154名（91%）回应。大多数参与者（85%）表达了接受偶然基因组研究结果的积极权利，包括当改良疗法未知时（85%）。只有3%的人认为可以接受将返回结果的决定权委托给一个独立委员会。研究人员，无论是父母（42%）还是医生（17%），都被认为有责任在孩子成年后向他们传达研究结果。大多数参与者（74%）表示，结果应与可能受影响的大家庭分享。这些结果与基线调查的结果非常相似。所有收到基因组结果的参与者都将再次这样做，并报告与他们表达的态度相似的行动。结论：随着时间的推移，父母对基因组研究的看法保持稳定。关于返回结果的准则应包括这些发现。(C) 2015 S. Karger AG，巴塞尔
Objective: We explore the stability of parental attitudes to the ethical issues raised by the return of genomic research results. Methods: A 19-item questionnaire was mailed to participants in a large genome research consortium 18 months following a baseline survey. We describe the stability of parental attitudes to (a) sharing of genomic research results, (b) endorsement of children in genonnic research, (c) responsibilities of researchers, and (d) responsibilities to extended family. We also explore their experience in receiving results. Results: Of 170 original participants, 154 (91%) responded. Most participants expressed positive rights to receive incidental genomic research findings (85%), including when ameliorative therapy was unknown (85%). Only 3% found it acceptable to delegate the decision to return results to an independent committee. Researchers, either with a parent (42%) or physician (17%), were felt to be responsible to convey research results to children when they reach adulthood. Most participants (74%) indicated that results should be shared with potentially affected extended family. These results are very similar to those of the baseline survey. All participants who received genomic results would do so again and reported actions similar to their expressed attitudes. Conclusions: The opinions of parents regarding genomic research remain stable over time. Guidelines on the return of results should incorporate these findings. (C) 2015 S. Karger AG, Basel