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New genetic technologies are raising
ethical questions. When evaluating these issues, it is useful to have a
framework that can be applied bioethical questions. I have listed the four
principles I have followed below, along with definitions for each.

 

1.     Autonomy: This is the importance of free will. It is the
basis of informed consent and states that from a healthcare perspective a
patient who is autonomous has the capacity to act with understanding when
making a decision.

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2.    
Nonmaleficence: This
principle requires that professionals never intentionally harm a patient,
including harm that results from negligence.

3.    
Beneficence: This
is considering the benefits of treatment against the risks or costs, for
example is the treatment in the patient’s best interest.

4.    
The Principle of Justice: This principle implies that there should be a fair
distribution of benefits and costs across all people.

 

A designer baby is a baby genetically
engineered in vitro for specially selected traits, which can vary from
lowered disease risk to gender selection. The process of creating a designer
baby is often questioned and argued because of the arguments surrounding its
moral and ethical standpoint. The first publication of a study using gene
editing techniques in human embryos by Liang et al. in 2015, was met with huge outrage by the scientific
community, even though there are certainly some positive things that can be
obtained from the use of genetic engineering used on unborn babies. It is
debated if parents will have the “right” to genetically modify their baby, and
ethicists are concerned with this new technology leading to a future of
consumer eugenics.

One main argument in support of designer babies, is
that the use of genetically engineering embryos is far from being wrong as it
has enormous potential in the fight against disease. Roughly 6% of all births
have a serious birth defect, which is genetic or partly genetic in origin. 1
Advanced and precise gene editing techniques could virtually eradicate genetic
birth defects, thereby benefiting nearly 8 million children every year. Some
ethicists believe it is a moral imperative and gene editing could significantly
lower this disease burden thereby benefiting billions of people around the
world over time. They think that intentionally refraining from engaging in life
saving research is to be morally responsible for the foreseeable, avoidable
deaths of those who could have benefitted. 2 others believe, genome editing in human embryos could have
unpredictable effects on future generations. This makes it dangerous and ethically
unacceptable. 3

The
Council on Ethical and Judicial Affairs released a statement in 1994 in support
of using genetic selection to prevent or cure specific diseases, but that
selection based on characteristics that had no bearing on the health, or
wellbeing of the baby was not ethical.

Currently
editing the genomes of human embryos is illegal in the United Kingdom, although
allowed with the goal of preventing a certain type of genetic disease. However,
taking folate during pregnancy reduces risk of a child developing
autism. 4 This is an example of medically altering a child and it is
considered ethically acceptable due to the benefit of the child, an example of
beneficence.

 

During
in vitro fertilisation, there is a treatment called preimplantation genetic
diagnosis (PGD) which allows viable embryos to be screened for various genetic
traits before implanting them in the mother. Through PGD, embryos are selected
that are not predisposed to certain genetic conditions. For this reason, PGD is
commonly used in medicine when parents carry genes that place their children at
risk for serious diseases such as cystic fibrosis or sickle cell anaemia. Using
this information, parents can make the decision on whether they wish to carry
out the pregnancy or terminate, although this raises huge ethical arguments
when considering the autonomy of the child.

 

The
concept of this designer babies concept is due to the development of Clustered Regularly
Interspaced Short Palindromic Repeats (Crispr), developed in 2012, which uses enzymes to target
and cut genes with pinpoint accuracy. 5 Due to this technology, it seems
likely that gene therapies could be used easily to eliminate mutant genes that
cause some severe diseases. Crispr has already been used to genetically modify
(nonviable) human embryos in China, using tripronuclear zygotes
to see if it is possible in principle. 6 It should also be recognised that
the destruction of the tripronuclear zygotes in this research is not morally as
unlike the embryos destroyed in human embryonic stem cell research, these
zygotes could not have been implanted and developed to term. Most countries
have not yet legislated on genetic modification,
but of those that have, all have banned it. A team of scientists warned
in ‘Nature’ less than
two years ago that genetic manipulation and modification methods like Crispr,
even if focused initially on improving health could
start us down a path towards non-therapeutic genetic enhancement. 7

Concerns
by those who oppose the idea of designer babies are mostly related to the
social implications of these children born with desired traits.

 

The social argument
against designer babies is that if this technology becomes a realistic and
accessible medical practice, then it would create a division between those that
can afford the service and those that cannot, as it is unlikely that a
government funded organisation such as the NHS would provide such technology.

Therefore, the wealthy would be able to afford the selection of desirable
traits in their offspring, while those of lower socioeconomic standing would
not be able to access the same options. As a result, economic divisions may
grow into genetic divisions and would further increase the already apparent
societal divide as designer babies would most likely be better looking and
smarter and have the greater potential for the higher paid jobs, creating a
generational cycle of wealth. This could create classes between designer
and non-designer babies. This is not the fair division of resources
and goes against the principle of justice,
as the use of technology would only be available to those who are able to
afford it. On the other hand, some would argue that the technology is open to
everyone, including those who cannot afford it, and why should those who can
afford it be limited by those who cannot.

 

Bioethicists
have argued that parents have a right to prenatal autonomy, which
grants them the right to decide the fate of their children. Although this
does not consider the autonomy of the child. However, this is met with
opposition regarding the theory of when life begins. Parental responsibility is
a legal term, defined as “all the
rights, duties, powers, responsibilities and authorities which by law a parent
of a child has in relation to the child and their property”. 8

 

The
phenotypic characteristics that may be the parents’ most desired could include
disease related traits, for example, risks of developing or certain types of
cancer, longest expected life span and least expected cumulative duration of
hospitalisation. 9 However, parents may use this
technology for superficial purposes, such as purposely seeking out a certain
hair or eye colour for appearance concerns only. Some view this as an incorrect
and immoral use of technology as this would only be for appearance reasons and
would not affect the health, or wellbeing of the baby. Also, after some
generations, everyone may be relatively similar, decreasing the size of the
species gene pool. 10 Although, there is evidence to show that Younger adults
judgments of political candidates’ competence from their
facial appearance and respond differently to facial qualities.

As a result, the child may have more success in a future career, therefore
being of benefit to the child and showing the principle of beneficence.

If the process is not
done carefully, the embryo could be accidentally
terminated. Furthermore, the technology used is not 100% safe yet. It is
only in the experimental stages at this point and the technology is still very new and there is not enough data to support
its success. For example, there is no data for the long term possible side
effects that may occur later in the life of the genetically modified human. In
support of this, it is unknown whether
genetically modifying the babies will affect the gene pool of humanity. 1 It
would also be highly unethical to bring modified human embryos to term unless
we were very confident that the technique could be used safely. The risk would
simply not be justified by any potential benefits, in contrast to both the
principles of beneficence, and nonmaleficence.

 

The
issue regarding the gene pool can be witnessed clearly in the problems not
dissimilar from what China is currently experiencing, where their societal
proportion of males is significantly greater than that of females. This divide
can stem from the data shown below:

11                                                                                    

 

This
data shows how the widespread introduction and potential access of technology
that would allow someone to choose the sex of their baby, in the future, has
the potential to create an inability for humanity to efficiently
procreate.  If the number of females declines, it would have an adverse
effect on human population growth. Although this is data from one country
and the data may be different, or in complete contrast for another country.

 

On the
other hand,  if the technology was used
to remove a genetic disease, for example Huntington’s disease (an inherited disorder that results in death of brain cells) this may improve life as they will be
asymptomatic for the life they live, no matter the length. This supports the
principle of beneficence as this is considering the benefits of treatment
against the risks or costs. Another approach of beneficence is that this
provides the family of the unborn baby to have an alternative to abortion,
which will allow the baby life. Although this does remove the child’s autonomy as a
baby cannot consent to having its body and they may have chosen to live a
longer life, trying to manage their potential condition, or even that they
would have preferred to have never lived. In addition, there is the risk that
new diseases may be introduced accidentally with the use of genetic
modification technology. 12 Therefore the treatment may in fact harm, not
benefit the child, and is in contradiction of the principle of beneficence.

 

However, a complete
ban will increase the demand and send people to unauthorised and unregulated biologists
or overseas to receive the same treatment regulated biologists are capable of.  This has to potential to be in complete
opposite of beneficence and nonmaleficence of
the child as the treatment me be done incorrectly.  As a result, the child may be unable to claim
compensation regarding the incorrect or fault job, and unregulated biologists
may deliberately further alter the genetics of the child which could cause
harm.

 

It can be argued that
children are already engineered by parents in many ways. Education, religion,
and morals are all ways parents control their child. However, these are
environmental, and the child still has the autonomy to chose whether, for
example, they will follow a certain religion. The concept of genetically
engineering a child completely by passes the autonomy of the child.

 

Those
who believe that gene editing research should be banned need to explain why
this technology needs to be treated differently to other technologies and other
reproductive practices. In addition, they need to explain how the potential
risks outweigh the expected benefits to the child, and why the risks cannot be
managed with more specific legislation. Though some view that the government does not have the right to control
reproduction as it is the autonomy of the mother.

 

I believe those who object to the concept of
genetically modifying your children inconsistent with widely accepted
practices. Nearly all new technologies have unpredictable effects on future
generations, for example, the use of the internet. This has changed how we
communicate worldwide. Their future effect is very hard to predict, and though
could be catastrophic, for example, through cyberterrorism. This does not
mean they should be banned. Their expected benefits outweigh their expected
potential harm. This is in the same way as the potential benefit to a baby who
has had a chronic genetic gene removed, significantly outweighs the risk.

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