5. The ethical dilemma of gene therapy and enhancement:
exploring and establishing boundarie
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As the ambitious technologies associated with gene therapy and human enhancement rapidly
become a reality, society bears the responsibly of weighing their potentials and bioethical
rami cations. The Genomic Age originated in pursuit of a healthier society, aiming to use gene
therapy to grant a “normal” quality of life to those who would otherwise lack it. Most moral and
ethical scrutiny has arisen when technology offers the prospect of enhancement beyond this
perceived “normal” range. Thus, it can be argued that the core of this scienti c and moral dilemma
lies in the very de nition of genetic normality. Genetic engineering, controlling human biology at
its most fundamental level, has been argued as the logical “next step” in human evolution, or
otherwise the catalyst of a eugenic, dystopian future. Accounting for issues of human health,
dignity, and autonomy, one aims to differentiate gene therapy and enhancement, and take an
informed stance on permissibility within each practise
The issue of delineating and differentiating treatment and enhancement is not entirely new to
science or medicine – the ambiguity has long existed in plastic surgery and psychiatry (Lagay,
2001). Thus, ethics panels have already debated and ultimately accepted clear de nitions of therapy
and enhancement. “Therapy” is de ned as an intervention designed to maintain or restore bodily
organisation and functioning of states that are typical for one’s age and sex.“Enhancement” refers to
an altercation aiming to improve upon normal organisation, appearance, health, and functioning.
(Daniels, 1996) These concepts are highly nuanced and made even more complex when considering
the difference between somatic and germ line altercations. Somatic gene editing involves making
changes to genes within existing human cells, not affecting the reproductive cells (Evans, 2021).
Somatic gene therapy has been successful in treating HIV, sickle-cell disease and transthyretin
amyloidosis (World Health organisation, 2021). The value to society posed by this technology is
irrefutable
Germ line editing, a more ethically fraught practise, alters speci c genes within sex cells or early
embryos, producing effects that are heritable in successive generations (American Society of Gene
and Cell Therapy, 2020) Thus, germ line editing has the potential of removing a heritable disease
from an entire lineage. Generally, the current consensus among researchers, bioethicists, and other
stakeholders favours non-heritable (somatic) and strictly therapeutic applications of genetic
engineering. (Joseph et al, 2022)
The general attitude of acceptance towards gene therapy, and conversely, scepticism towards
genetic enhancement is no longer based on speculative theories. Several gene therapies for diseases
like acute lymphoblastic leukaemia and non-Hodgkin’s lymphoma have been introduced into
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