Fletcher J C, Richter G
University of Virginia School of Medicine, Charlottesville 22908, USA.
Hum Gene Ther. 1996 Aug 20;7(13):1605-14. doi: 10.1089/hum.1996.7.13-1605.
This two-part paper discusses moral and ethical questions raised by future trials of human fetal gene therapy. The first part examines broad moral issues to explore whether fetal gene therapy is a morally praiseworthy goal. Ought it be done at all? These issues include (i) how the concept of fetal gene therapy originally arose as a goal envisioned at the beginning of prenatal diagnosis, (ii) preimplantation genetic diagnosis as a better preconceptual alternative for parents at higher genetic risk, (iii) alternatives to genetic abortions, (iv) the social and economic priority of fetal gene therapy, and (v) whether fetal gene therapy is a "slippery slope" that will end in germ-line gene therapy. This part concludes that far more reasons exist to commend fetal gene therapy than to reject it, given its limits and modest social and economic priority. The second part responds to specific ethical questions that must be raised about any protocol for human gene therapy. These questions and issues are adapted to the prenatal situation: (i) how the previable fetus becomes a "patient," (ii) concern for clinical benefit and minimizing risks to the fetus and pregnant woman, (iii) concern for the voluntary and informed participation of the pregnant woman, the father, and for protection of their privacy, (iv) concern for fair selection of subjects, (v) considerations of harm to germ line cells, and (vi) the role of public oversight of fetal gene therapy. The article concludes by recommending a continuation of the consolidated Recombinant Advisory Committee (RAC) for the near future.
这篇分为两部分的论文讨论了未来人类胎儿基因治疗试验所引发的道德和伦理问题。第一部分审视了广泛的道德问题,以探究胎儿基因治疗是否是一个在道德上值得称赞的目标。究竟是否应该进行这项治疗?这些问题包括:(i)胎儿基因治疗的概念最初是如何作为产前诊断伊始所设想的一个目标而出现的;(ii)对于遗传风险较高的父母而言,植入前基因诊断作为一种更好的孕前替代方案;(iii)基因流产的替代方案;(iv)胎儿基因治疗的社会和经济优先级;以及(v)胎儿基因治疗是否会成为一条通向生殖系基因治疗的“滑坡”之路。这部分得出的结论是,鉴于胎儿基因治疗存在局限性且社会和经济优先级不高,支持它的理由远比反对它的理由多。第二部分回应了关于任何人类基因治疗方案都必须提出的具体伦理问题。这些问题和事项适用于产前情形:(i)可存活前的胎儿如何成为一名“患者”;(ii)对临床益处以及将对胎儿和孕妇的风险降至最低的关注;(iii)对孕妇、父亲自愿且知情参与以及对其隐私保护的关注;(iv)对公平选择受试者的关注;(v)对生殖系细胞损害的考量;以及(vi)公众对胎儿基因治疗监督的作用。文章最后建议在不久的将来继续保留合并后的重组咨询委员会(RAC)。