Assignment 1-7: Eugenics and Technology : Brave New World

Navneet Kaur

Ontario Tech University

HLSC 3712U: Professional Ethics in Nursing

Dr. Mily Ryan – Harshman

November 1, 2022
 Assignment 1-7: Eugenics and Technology : Brave New World

The accessibility and cost of the CRISPR gene editing technique, the requirement for

rigorously controlled clinical trials, and concerns about the production of designer offspring with

desired physical characteristics are the main ethical concerns. Finding novel treatments for

ailments including cystic fibrosis, blindness, and cancer would be acceptable results. The kinds

of results that might not be acceptable include harming human embryonic stem cells in the long

term and damaging society's binary perception of impairment as abnormal. Making sure

informed consent is obtained and making sure that compassionate use is practised are the steps

that should be followed to make sure that a widespread new eugenics movement never acquires

any traction.

The availability of health care is a finite common resource, and costly new technology

may increase constraints that lead to unequal access, particularly to cancer therapies. This

strategy is doomed due to the intense pursuit for money and the lack of innovative thinking.

Either a national health care system will be adopted with broad access, severely restricting costly

new medications, gene therapies, and CRISPR-based biologics, or only the wealthiest among us

who can afford them will have access to these treatments. The cost of many cell-based medicines

is high, especially patient-specific immunotherapies and stem cell therapies. The cost of such

medicines will increase to a point that people with typical incomes and insurance cannot afford

them. Customized gene editing, which is a major component of CRISPR, will be added on top of

that. Access to such pricey therapies is virtually unattainable for those without insurance or who

rely on public health care.

As an illustration, a mother takes her 15-month-old son to the family doctor. The boy

struggles to stand up straight, trips up frequently, and misses developmental milestones typical
for a toddler his age. The doctor determines the youngster has Spinal Muscular Atrophy (SMA),

a crippling genetic disorder that results in skeletal muscles like those in the arms and legs

weakening and atrophying as the child ages (Irvine, 2019). SMA had no known treatments prior

to 2016. But for the first time, two new genetic medicines provide hope. A one-time virally

administered gene therapy called Zolgensma was introduced by Novartis in 2019 with the goal of

providing a fully functional copy of the disease-causing SMN1 gene (Irvine, 2019). But there's a

catch: Novartis' $2 million per treatment cost for the gene therapy (Irvine, 2019). A family

without insurance would be responsible for covering all expenses. That a family would be unable

to pay for an operation that would save their child's life is heartbreaking.

Clinical trials and in-depth reviews are crucial for identifying novel illness therapies as

well as innovative techniques to identify, diagnose, and lower the risk of developing the

condition (Ferris, 2015). Researchers can learn things about what works and what doesn't in

humans through clinical trials that cannot be discovered through laboratory or animal testing.

Clinical trials also assist medical professionals in determining whether a novel treatment's

negative effects are tolerable when compared to its potential benefits (Ferris, 2015). Clinical

trials have yet to yield results, which is unknown to researchers. If they did, the need for them

would not have existed in the first place. A patient may find it challenging to determine whether

to take part in a clinical trial due to this ambiguity. Millions of people have been benefitted

because others before them elected to participate in a study that led to a new, more effective

treatment, even though in rare occasions, patient volunteers have been damaged by the treatment

or surgery on a clinical trial (Ferris, 2015). Clinical trials are essential but deciding whether or

not to take part in one is a very personal decision that depends on a variety of factors. Before one

possible drug enters clinical trials, around 1,000 others are examined, according to the American
Cancer Society (Ferris, 2015). Before a clinical trial is launched, new cancer treatments are

typically examined for at least six years (Ferris, 2015). I was assigned to a palliative unit during

my first year's clinical nursing placement. A young patient of mine who took part in a new drug's

clinical trial and experienced liver and renal failure as a result. There was no way to improve the

patient's condition in this tragic situation. Because of this, it is crucial to undertake in-depth

research, invest in high-quality materials and equipment, and make patients and volunteers as

safe as possible when conducting clinical trials. It might be a matter of life or death.

The necessity for rigorous clinical trials and requests from patients who are desperate for

novel medicines must be balanced. This dilemma will not go away with the development of

CRISPR. Some guidance on whether and how to permit compassionate use or increased access

to experimental medicines is provided by US, European, and corporate policies, although they

may need to be modified to address gene editing (Foulkes et al., 2019). People who want to take

advantage of desperate patients and their families by spreading false information or making

exaggerated claims are always eager to do so. For CRISPR to be used and spread effectively, it

must be prevented from being hailed as a cure-all for all genetic diseases.

It is a justified concern that CRISPR could be utilised to produce designer offspring with

desired physical characteristics and abilities. Much more contentious is the idea of repairing

disease-causing genes in human embryos. Designer babies, in my opinion, are an impending

ethical calamity. People can easily get carried away with what they believe to be perfect, which

is abnormal. Couples shouldn't be permitted to change their offspring's genes to suit their

personal tastes. Parenting lacks the humility that teaches parents to deal with the unexpected

when genetic intervention occurs. Furthermore, having children would make it harder to have a

sense of sympathy with people who are less fortunate. People would consider their offspring to
be unfit rather than disadvantaged if their parents chose not to pursue genetic advantages. It is

unethical to change human nature by genetic engineering as opposed to political, social, and

societal advancements. Instead of trying to intervene and alter what is supposed to happen

organically, perhaps we could alter our understanding of what perfection is. Think of a world

where everyone has the same appearance. The human population loses its diversity as a result.

Designer babies are a selfish, immoral, and wicked idea. Such effort has a much greater potential

benefit for society, yet it diverts time, talent, and resources from science (Buck, 2019). An exact

quote from the article "It's extremely irresponsible" follows: An ethicist from Canada criticizes

the renegade Russian's intention to modify human embryos. Although the quote was used in a

different context in the article, it works wonderfully to support my position.

The idea of completely eliminating a certain feature from a population also resembles the

resurgence of the eugenics movement. It is possible to employ CRISPR technologies to direct

human development, which is eventually how some intellectuals of the time imagined early

eugenics. It is true that an individual will no longer be able to pass on a certain trait to their

progeny once the genetic makeup responsible for the trait has been eliminated from the person's

germline cells (Foulkes et al., 2019). The National Academy of Sciences advised in a study from

2017 that, for the time being, CRISPR and other gene-editing methods should only be allowed in

human clinical studies intended to treat and prevent serious diseases, not improve infants

(Schwartz, 2020).

In 2012, CRISPR-Cas9 was initially employed as a method for gene editing (Fernandez,

2019). The popularity of the technology has skyrocketed in a short period of time. CRISPR has

already transformed how researchers conduct their work. But its application to humans is what

everyone anticipates, either with delight or horror. Theoretically, CRISPR technology might
allow experts to freely fix any genetic mutation, curing the disease it causes. There are still a lot

of unanswered questions regarding CRISPR therapy, which is still in its early stages of

development.

Cancer patients' lives can be significantly improved with CRISPR. In fact, one of the first

and most sophisticated CRISPR clinical trials is presently underway in China and is evaluating

the potential of the gene editing technique to treat patients with advanced esophageal cancer

(Fernandez, 2019). The first step of the experimental treatment at the Hangzhou Cancer Hospital

is to remove immunological T cells from the patient. The cells are altered using CRISPR to

delete the gene encoding for PD-1, a protein that some cancers can bind to on the surface of

immune cells and urge them not to attack (Fernandez, 2019). The patient is subsequently given

the changed cells again, this time with an increased ability to combat cancer cells (Fernandez,

2019). CRISPR has so far been used in China to treat at least 86 patients with various cancers.

Another CRISPR trial is underway in the US to treat cancer, with the first patients receiving

treatment in April 2019. (Fernandez, 2019). Researchers at the University of Pennsylvania are

using CRISPR to delete PD-1 and alter an immune cell surface protein that will enable the cells

to recognise and kill cancers (Fernandez, 2019). This is one illustration of how CRISPR may be

used to treat disease.

CRISPR is also a strong contender for the treatment of genetic blindness. Because so

many hereditary forms of blindness result from a particular mutation, it is simple to direct

CRISPR-Cas9 to target and alter a single gene (Fernandez, 2019). Additionally, the immune

system's action in the eye is restricted because it is an immune privileged area of the body.

Given the worries about the chance that CRISPR could trigger immunological reactions against

it, which would impede its activity and result in adverse effects, this becomes a benefit. The most
prevalent genetic cause of childhood blindness, Leber congenital amaurosis, has no known cure,

but Editas Medicine is developing a CRISPR therapy to treat it (Fernandez, 2019). Before the

infants entirely lose their vision, the company hopes to use CRISPR to target the disease's most

common mutation and restore the function of light-sensitive cells (Fernandez, 2019). One of the

five senses can be cured by CRISPR, which is a wonderful finding. This can give many people

new options and significantly raise one's quality of life.

A hereditary condition known as cystic fibrosis leads to serious breathing issues.

Although there are treatments for the symptoms, a person with this condition only has a life

expectancy of about 40 years (Fernandez, 2019). By correcting the mutations that lead to cystic

fibrosis, which are found in the CFTR gene, CRISPR technology might help us find the source of

the issue. Researchers have demonstrated that the most prevalent mutation causing cystic fibrosis

may be corrected using CRISPR in human lung cells taken from the disease's sufferers

(Fernandez, 2019). Human testing would be the next phase, which Editas Medicine and CRISPR

Therapeutics both want to carry out. However, as there are numerous distinct mutations that can

cause the CFTR gene to produce cystic fibrosis, alternative CRISPR medicines will need to be

created for various genetic flaws (Fernandez, 2019). According to Editas, it will examine both

the most prevalent mutations and some of the unusual ones for which there is no known cure

(Fernandez, 2019).

The potent gene editing technology CRISPR can have negative side effects that lead

human embryonic stem cells to throw away significant portions of their genetic material. Errors

sometimes have very serious repercussions (Ledford, 2020). The stakes are raised for any

mistakes made along the route when modifications are applied to embryos because they have the

potential to permanently alter the genome and be passed on to subsequent generations. Unknown
changes in genes that are passed on to the population run the risk of being dangerous or having

no effect. This line from the article headed "It's utterly irresponsible": "Many of our genes have

numerous functions, so altering them could have unanticipated repercussions." Canadian ethicist

condemns the rebel Russian's proposal to change human embryos adds more proof in favour of

the argument that tampering with and manipulating human embryos for potential purposes is

dangerous. Before the technology could be deployed safely, decades of research would be

required.

Disability does not equate to incapacity. People with impairments have beaten the odds

against them. No matter how evident or undetectable, a disability does not determine a person's

value and should not be viewed as aberrant. We are all wonderful and unique individuals. People

now believe that an ideal, flawless person can be developed and altered thanks to CRISPR. We

all have emotions, sentiments, wants, imaginations, expressions that may differ from others', and

various ways of viewing the world. At the end of the day, we are all human. These distinctions

are not negative and shouldn't be despised. CRISPR's genome sequencing was done to find faulty

genes and fix genetic errors (Schwartz, 2015). But seeing a disability as a typo fosters a

pejorative conception of impairments and downplays genetic variety. People who do not have

disabilities frequently underestimate how happy disabled people are with their lives. In reality,

there isn't much of a difference in the two groups' quality of life, and the majority of persons with

severe disabilities are positive about it. People also have a tendency to overstate the relationship

between health and happiness, giving health more importance and weight than other aspects like

social support or economic stability.

Early proponents of eugenics claimed that mental disease, criminal propensities, and even

poverty were inherited traits that could be eliminated from the gene pool via breeding (Dresser,
2020). In the past, eugenics promoted the reproduction of so-called superior, healthy stock and

discouraged the reproduction of mentally impaired people or anyone who deviated from the

social standard (Dresser, 2020). Eugenics was popular in America for a significant portion of the

first half of the 20th century, but it gained its unfavourable reputation mostly as a result of Adolf

Hitler's obsession with producing a superior Aryan race (Dresser, 2020). Modern eugenics, also

known as human genetic engineering, has advanced significantly in terms of science and ethics

and holds out hope for curing many debilitating genetic diseases. Eugenics is the process of

improving the human species via the deliberate mating of individuals who possess particular

desirable hereditary qualities (Dresser, 2020). By eliminating disease, impairments, and other

supposedly undesirable traits from the human population, it seeks to lessen suffering among

people. Eugenics is a truly effective strategy for human evolution. This is a great improvement,

and I wholeheartedly agree with it. For any research or experiment to be deemed ethical,

informed consent must be acquired. In order for research or an experiment to be considered

ethical, the individual doing it must have good intentions. An ethical requirement for study

involvement is informed consent.

A crucial step that should be taken to make sure that a widespread new eugenics

movement never obtains any traction is to establish individual consent. This is owing to the fact

that a person should be aware of any potentially fatal hazards associated with the research,

operation, or experiment. Making research consent relevant is difficult since, in daily life, the

ordinary adult is required to read and consent to a number of policies and terms, from software

updates to liability waivers for school field trips to credit card applications. The fact that we are

aware that we may not obtain the best possible service or even any service at all if we refuse to

accept the terms makes these agreements coercive in many respects. Without having read the
policy, we frequently incline to agree. We lack both knowledge and genuine free will. Similarly,

although though we are required to sign a consent document before undergoing an invasive or

surgical operation, the clinical informed consent process may seem rote to us and may even be

swiftly carried out. The advantages of the operations are intended to be immediate and personal,

and the dangers may be seen as manageable because of the patient's faith in the therapist. This

might not be the case in every situation where informed permission is required. Unfortunately,

patients and clinical investigators may lack sufficient context for meaningful informed consent in

the study setting as a result of defective consent procedures in everyday life and in usual health

care settings, as well as due to most people's lack of familiarity with research. It is essential to

educate patients so they can provide their consent voluntarily for clinical trials and research. The

patient or participant must be given a clear explanation of all terms, conditions, and dangers in

language they can comprehend. For consent to be morally acceptable, this must be done.

Researchers will need to think about how to administer consent so that potential recipients of

modified embryos can make an educated choice in the event that human embryo genome editing

is deemed secure enough for a clinic's usage. Truthfulness, tact, regulatory adherence, and

adherence to the highest ethical standards are all necessary for informed consent.

Another crucial step that needs to be taken to prevent a widespread new eugenics

movement from taking off is compassionate use. Expand access is another term for

compassionate use (Moynihan, 2020). Each and every clinical study and piece of research needs

to be done with compassion. It is the use by a single patient of a medical product under research

that is intended to treat a critical or life-threatening disease outside of a clinical trial (Moynihan,

2020). It offers a crucial route for individuals with serious illnesses to get unlicensed

investigational medications, biologics, and medical equipment. Some patients who are close to
passing away resort to severe or even dangerous measures in an effort to extend their lives. This

should be kept in mind by researchers, experimenters, and medical experts as they develop

and/or consider all choices and alternatives. As new medicines are prioritised in experimental

medicine and research, compassionate usage should develop further. This is because it is done

for a person's highest good. I think a paternalistic attitude would be okay when giving

compassionate use because it can help someone more than hurt them. If this strategy were to be

employed, all individual aspects, including mental and physical health as well as cultural and

religious beliefs, should be taken into account.