Preconception care and genetic risk: ethical issues

Preconception care and genetic risk: ethical issues
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DOI:
10.1007/s12687-011-0074-9
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发表时间:
2012-07-01
影响因子:
1.9
通讯作者:
Knoppers, Bartha M.
Knoppers, Bartha M.
中科院分区:
其他
文献类型:
--
作者:
De Wert, Guido M. W. R.;Dondorp, Wybo J.;Knoppers, Bartha M.

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可单独向已知或怀疑其子女患有遗传疾病的风险增加的夫妇提供孕前保健,以解决生殖方面的遗传风险,或系统地向育龄夫妇或个人提供孕前保健。查明有传播(严重)遗传病风险的夫妇,使这些夫妇能够避免生育子女或调整其生育计划(利用产前或植入前诊断、捐赠配子或收养)。伦理问题涉及通过孕前遗传咨询或筛查提供这些选择的可能目标,反对堕胎和胚胎选择,对优生学和医疗化的关注,以及专业-客户关系和/或人口筛查规范框架中出现的问题。虽然提高生育自主性,而不是预防应被视为遗传风险的孕前保健的主要目标,指导性咨询可能是可以接受的,在特殊情况下,和预防意义上避免严重的痛苦可能是一个适当的目标,具体的社区为基础的孕前筛查计划。似乎不可避免的全面孕前筛查的前景提出了进一步的伦理问题。
Preconception care to address genetic risks in reproduction may be offered either individually to couples with a known or suspected increased risk of having a child with a genetic disorder, or systematically to couples or individuals of reproductive age. The identification of couples at risk of transmitting a (serious) genetic disorder allows those couples to refrain from having children or to adapt their reproductive plans (using prenatal or preimplantation diagnosis, donor gametes, or adoption). Ethical issues concern the possible objectives of providing these options through preconception genetic counseling or screening, objections to abortion and embryo-selection, concerns about eugenics and medicalization, and issues arising in the professional- client relationship and/or in the light of the normative framework for population screening. Although enhancing reproductive autonomy rather than prevention should be regarded as the primary aim of preconception care for genetic risks, directive counseling may well be acceptable in exceptional cases, and prevention in the sense of avoiding serious suffering may be an appropriate objective of specific community-based preconception screening programmes. The seemingly unavoidable prospect of comprehensive preconception screening raises further ethical issues.