Human Fetal Gene Therapy: Moral and Ethical Questions

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Abstract
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. This paper addresses moral and ethical questions about human fetal gene therapy. It first examines broad moral issues: (i) the origins of the concept of fetal gene therapy, (ii) the alternative of preimplantation genetic diagnosis, (iii) alternatives to genetic abortions, (iv) the priority of fetal gene therapy, and (v) whether fetal gene therapy is a “slippery slope” to germ-line gene therapy. The paper finds more to commend fetal gene therapy than to reject it, but counsels a very modest priority. Second, specific ethical questions are addressed: (i) how the previable fetus becomes a “patient,” (ii) benefits and risks to the fetus and pregnant woman, (iii) voluntary informed consent and privacy, (iv) selection of subjects, (v) harm to germ line cells, and (vi) public oversight of fetal gene therapy.

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