He Jiankui, a Chinese scientist, had been imprisoned for three years and fined three million yuan for

creating the world’s first gene edited babies. He altered the genes of twin girls to make them
immune to HIV infection through the gene-editing technology known as CRISPR-Cas9. The scientist
was also involved in the birth of a ‘third gene-edited baby’. Talking about his work, he said, "I
understand my work will be controversial - but I believe families need this technology and I'm willing
to take the criticism for them." The Chinese government carried out a police investigation against
him and charged him guilty of “acting in the pursuit of personal fame and gain" and “disrupting
medical order”. A debatable conclusion that may be drawn from the He Jiankui case was about
morality vs the power of science. The question that arises from here is whether this action would be
considered ethical because the scientist tried to protect the twins from HIV or would it be
considered unethical because he did not think about the long-term consequences of this approach.

The National Cancer Institute describes gene therapy as “an experimental treatment that adds a new
gene or replaces or repairs a mutated (changed) gene inside the body’s cells to help prevent or treat
certain diseases, such as cancer.” It is the modification of genetic material in a living organism.

The dilemma lies in the two conflicting perspectives in this situation, one where it is believed that
individuals are responsible for their body changes and should have the right to edit their genes
whereas another propounds the idea that making of the genes is a natural process and altering them
is equal to interfering with God’s work. These views are often formed on the basis of cultural
differences and the level of autonomy regarding editing genes that is appreciated in each culture.
Throughout this essay, I will explicitly discuss the arguments brought forward by those who feel gene
therapy is ethical and those who are against it.

Gene therapy has been a controversial topic in all countries where the issue has been raised.
Although in the recent past its acceptance rate worldwide is increasing. It is true, that the
opportunities given to parents to select and modify their children will increase overtime. One of the
most important aspects in learning, to what extent is gene therapy in fetuses ethical, is the access to
informed consent. Several expectant mothers are using prenatal diagnosis, MRI and genetic
screening to ensure that they are informed and carry out affective decision making. Failure to
provide proper antenatal diagnosis leading to the delivery of a physically challenged baby could
result in parents dragging the doctors to the court and filing cases against them. Parents have the
right to decide whether they want to keep the child or would want to terminate their pregnancy
especially in the case of a physically challenged baby. To be able to practice this, it is their right to
know the kind of baby that they will be giving birth to. In the Glicksmancase, the doctor failed to
inform the mother that she was at a high risk of delivering a physically challenged baby] with
congenital anomalies. This meant that later, the doctor held the mother responsible for the liable
damages. A similar case was also bought to the South African Constitutional Court where the mother
filed a case against the physician who failed to inform her of the baby being at a very high risk of
Down Syndrome. Therefore, to manage pregnancies with a diagnosis of fetal abnormality the child
bearer has to be informed about the risks that she will encounter when delivering the baby.

It is often seen that mothers wish to terminate their pregnancy when they learn that they are going
to give birth to a physically challenged child. This is mostly the case with pregnant women who have
found to be carrying a fetus with trisomy 21. In such a case, the choice between delivering a child
with an intellectual disability and terminating the pregnancy is a real dilemma. Parents may be
relieved to know that early treatment can improve their child’s cognitive functioning and play a part
in improving their quality of life. Parents can have morally sound reasons of terminating their
pregnancy upon knowing that they will deliver a child with Down Syndrome. However, the
development of FTDS can prevent women from having abortions and facilitate autonomous
reproductive choices. This is particularly helpful for couples who live in areas where abortion is
illegal. Even for those couples who are not opposed to termination, ending their pregnancy can have
long term psychological consequences. Beneficence is served because raising the IQ of individuals
with Down Syndrome will give them the control of their lives. Parents are freed from their child’s life
long dependence and responsibilities and their primary concern of who will look after their children
when they die. A study was conducted which compared the benefits of 21 women who had prenatal
diagnosis and continued their pregnancy with 17 women who received their child’s diagnosis at
birth. The 21 women with prenatal diagnosis believed that they experienced several benefits
including the chance to prepare educationally and psychologically for the birth of their child,
meeting the pediatric subspecialists who would care for their child once born, and the opportunity
to deliver at a tertiary medical center where they would not be separated from their infant. OR a
relatively recent basic science study explored the possibility that the extra copy of chromosome 21
could be ‘silenced’ in an in vitro model system.11 By inactivating the third copy of chromosome 21,
Jiang and colleagues demonstrated that they could get normal development to proceed. This study
received much attention in the scientific and lay press, with The Guardian commenting, ‘Although
full treatment is still many years off, the work will drive the research for therapies that improve
common symptoms of DS.

Gaucher’s Disease is an inherited condition characterized by insufficient levels of the enzyme

glucocerebroside. This means that cells don’t produce the lysosomal enzyme GCase causing bone
disease, anemia, fatigue, eye problems, seizures, and brain damage. Children with Gaucher’s disease
do not live up to more than two years. A study was carried out on mice to tackle this disease through
prenatal gene therapy. By using a virus to supply normal copies of GBA to a developing fetus, the
team was able to minimize the brain damage. The virus was implanted in fetus mice carrying GBA
mutations and having symptoms similar to the neuronopathic Gaucher's disease. Such mice normally
survive up to only 15 days after birth but these treated mice lived up to 18 weeks, were also able to
reproduce and showed normal brain levels of GCase activity. This new approach will bring hope, not
only for GD, but also for other inborn errors of metabolism that can potentially be treated using fetal
gene therapy,” claims Jerry Chan, Ph.D., associate professor and senior consultant, department of
reproductive medicine, KK Women’s and Children’s Hospital, Singapore. Moreover, fetal gene
therapy has also been able to treat neurological disorders. In the study, the researchers from
Children’s National Hospital found that oxidative stress impairs learning and memory. The study was
carried out on a pre clinical models where they tried to reduce GSK3β levels in POMC-expressing cell.
As a result, inhibitory neurotransmission was significantly improved and memory deficits due to high
oxygen levels were reversed.