Fetal gene therapy: Balancing ethical theory, scientific progress and the rights of others

Doctoral thesis English OPEN
Childs, Richardo
  • Subject: BJ | H1 | QH426

This thesis examines the relationship between rights and duties in the field of fetal gene therapy and assesses if the current regulatory position within England and Wales is compatible with the intergenerational aspects of scientific progress within fetal gene therapy (FGT). Within the field of genomics, the fetal junction has become a site where gene therapists are developing a range of medical techniques, such as fetal gene therapy and in utero stem cell therapy. Utilising such techniques raises questions about the intergenerational aspects of scientific progress and how intergenerational rights can reshape regulation. The thesis focuses upon these key questions: Are the intergenerational issues of FGT taken into account by both direct and indirect stakeholders? Can intergenerational issues override the reproductive rights of the mother? Have intergenerational issues impacted upon the clinical applications implicit and manifest in this work? Addressing such questions is important because the conflict between the rights of the mother, fetus, clinical researchers and society have the potential to delay progress in FGT. In addressing these questions the thesis utilised thematic analysis of relevant regulatory institutional documents, from international declarations to regulatory guidelines; and semi structured interviews of identified FGT practitioners to identify areas of potential conflict. Following the data collection and analysis, the field data identified five key areas of potential conflict, which were then assessed using the Principle of Generic Consistency (PGC) as proposed by Alan Gewirth (1978) and later altered by Beyleveld and Brownsword (2001). The thesis will argue that the field data shows that established regulatory principles such as human dignity are of limited value in relation to FGT. In other areas such as informed choice, autonomy and intergenerational equity the PGC is applied to define and partially resolve the outstanding areas necessary for consistent ethical and regulatory guidance in FGT
  • References (5)

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