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Running head: ANALYSIS PAPER 1

Analysis Paper: Preimplantation Genetic Diagnosis


Kelli J. Koop
Ferris State University











ANALYSIS PAPER 2
Abstract
Preimplantation genetic diagnosis (PGD) is a testing technology used to screen for genetic
diseases and certain genetic characteristics. There are many benefits to utilizing this technology,
such as preventing the passing on of genetic diseases. However, over time, many ethical
dilemmas have developed based on the procedure and how it can potentially be used. PGD will
be affecting the healthcare environment in many ways; assessment, treatment, and overall
management of patient care. Therefore, since PGD will be affecting nursing practice, nurses
should participate in the implementation process. In addition, there is debate over whether PGD
should be offered, regulated, or discontinued all together. Since PGD offers a wide variety of
advantages and disadvantages, it is important nurses consider both sides of the ethical dilemma.













ANALYSIS PAPER 3
Ethics in Reproduction: Preimplantation Genetic Diagnosis
The variety of services healthcare professionals and nurses can provide is growing
everyday; from saving more lives to providing better end-of-life care. The ability to control
which genetic traits humans carry into this world has been proposed by a procedure called
preimplantation genetic diagnosis (PGD), also known to social media as designer babies
(Steinbock, 2008). According to Whetstine (2013), PGD is a genetic testing technology
performed on embryos. The process of PGD involves a few phases. First, embryos are created
with sperm and eggs and grown in the laboratory for approximately five days. After the eggs
reach an 8-cell stage, a genetic counselor and IVF physician analyze the embryos. The best
embryo is chosen and implanted into the mother while the other embryos are discarded
(Whetstine, 2013). According to Verlinsky et al. (2004), as of the year 2004, 754 babies were
born from 4,748 PGD attempts and 207 pregnancies were still ongoing (p. 293). PGD is
performed for a variety of reasons, such as to prevent passing on genetic abnormalities, choosing
gender, choosing specific genetic characteristics, or creating a donor sibling.
PGD raises concerns on whether it can be used ethically and if the procedure itself is
ethical. These ethical concerns include the following: having a duty to protect future children
from genetic diseases, if we have the capability to do so; the negative effects PGD could have on
social classes; having the ability to choose vanity characteristics for children; the possibility of
creating an unhealthy balance between sexes through gender-selection; using a person as spare
parts for another human being, as they do when they create a donor sibling; and, the discarding
of the unwanted embryos during the procedure which may be considered abortion. It is evident
that PGD can have widespread effects, so it is necessary to explore a variety of viewpoints; for
example, points of view from the patient, family, healthcare professionals, and society. Also, it is
ANALYSIS PAPER 4
important this topic is addressed now before it is implemented into the healthcare field where it
possibly could have negative repercussions on patients or society. PGD also has the potential to
change how patients are assessed, diagnosed, treated, and how their care is managed overall.
Therefore, since nurses spend the most time with patients, they need to be involved with
exploring the issue of PGD so they can provide their input (Winkelman, 2004). Furthermore,
since PGD could affect how patients are cared for, nurses should not only want to be involved in
the issue, but should strive to make an impact on the decision-making process of PGD policies
and usage.
Theory Base
Nursing Theory
PGD can be related to Watsons theory which is built on four major concepts: human
being, health, environment/society, and nursing (Nursing Theory, 2013). In Watsons theory, she
talks about how we should use problem solving for decision-making; meaning, we need to
address the core problem, rather than just treat the symptoms (Nursing Theory, 2013). Applying
her theory, PGD can seem to have a positive effect on the concept health. Instead of treating
individuals symptomatically after they have a genetic abnormality, treatment should focus on
eradicating the genetic disease altogether. Therefore, since PGD is being proposed as a solution
to genetic diseases and abnormalities, the use of PGD for this purpose should be discussed as a
possible solution in the decision-making process.
Watsons theory also proposes that caring for a humans health involves promoting the
highest level of overall physical, mental, and social function (Nursing Theory, 2013). When an
individual has a genetic abnormality, they are often unable to maintain the highest level of
functioning in one or more areas. For example, there could be a single-cell abnormality that
ANALYSIS PAPER 5
causes an individual to have sickle-cell anemia, which would affected them physically; with a
chromosomal abnormality, the individual could have autism and be affected mentally and
socially (National Library of Medicine, 2014). In addition, when an individual is affected
physically, their symptoms often have negative repercussions on their mental and social
functioning as well. Therefore, to promote an overall high level of function for future children,
PGD might be recommended to prevent a genetic abnormality from occurring. Overall,
prevention is better than treatment. This practice is evident in the healthcare settings already, in
our attempts to prevent infection through hand washing, personal protection equipment, and
sterile technique. PGD extends this prophylactic concept beyond infection into preventing
genetic diseases and abnormalities as well.
Social Theory
In contrast, Karl Marxs social theory would stand in opposition to PGD today. Marxism
focuses on the need for equal relationships between social classes and equal access to resources
within society (Alaszewski & Manthorpe, 1995). PGD could have an opposite effect on society
in which an even bigger gap between social classes is created through the process of selection.
Since PGD requires in-vitro fertilization, the cost can be between $40,000 and $100,000 per
cycle and according to Botkin (1998), insurance companies do not cover this procedure.
Although PGD could become available, due to the high costs, only the higher social classes may
be able to afford PGD. Meaning, not only will the higher classes be better off financially, but
now they will also have a physical/genetic advantage over the lower classes thereby creating a
larger gap between social classes. Through PGD, the higher classes could potentially become a
more superior group of human beings financially, physically, and mentally. Nurses and other
healthcare professionals need to reflect on their role in providing the best care for each social
ANALYSIS PAPER 6
class and in addition, consider how an imbalance between social classes could affect their ability
to care for every social class equally.
Interdisciplinary Team
If a patient decides to undergo PGD, many members of the interdisciplinary team could
be utilized to improve the patients quality of care. Social workers could aid the patient in
finding financial resources to help pay for the procedure or find support groups for those who do
not have family members supporting their decision to use PGD. The patient could also benefit
from a case managers expertise. A case manager can help organize and plan their healthcare
appointments and procedures, which can become overwhelming to some patients. Overall, the
attention of the interdisciplinary team would be focused solely on the mother. Though a portion
of the interdisciplinary team might be needed, the preventative strategy that PGD offers may
keep that need to a minimum.
On the other hand, if a patient decides not to use PGD, additional help from the
interdisciplinary team may be needed. For example, a patients newborn could require physical
therapy and occupational therapy if born with a physical disability. Social workers may be
needed to help find additional resources in the community and a case manager needed to help
organize the plan of care for the child. The interdisciplinary team may not only find it necessary
to focus on the affected child, but possibly other members of the family as well. A childs
disability could affect the function of a family, creating a need for a psychologist or counselor
for family members. Therefore, many more members of the interdisciplinary team, as well as
additional resources, would most likely be needed to help multiple individuals when PGD is not
used.
Assessment of the Healthcare Environment
ANALYSIS PAPER 7
Policies
Assuming PGD becomes evidence-based practice, it could potentially change many
different hospital policies. The healthcare team would need to change their approach to patient
care; changing from treating the patients symptoms and conditions to prophylactically screening
them for genetic abnormalities. Nurses would need to educate couples on the option to screen for
genetic abnormalities before becoming pregnant. These couples would be informed about what
PGD is, how the process works, and the advantages/disadvantages of having it done. The further
PGD is implemented into the healthcare environment, the less nurses and other healthcare
workers would encounter certain genetic diseases and abnormalities. Once a disease is prevented
from reoccurring and those individuals already diagnosed with the disease pass away, certain
genetic diseases could actually become nonexistent. Just as vaccines eradicated smallpox in
America, certain genetic diseases could be eradicated by PGD. Therefore, healthcare
professionals would experience fewer individuals with genetic diseases and consequently have
fewer skills in treating those patients when they do enter into the healthcare environment. If the
healthcare workers do not practice those skills regularly, they could lose them. Though they may
lose these skills, there will also be less of a demand to use them in the healthcare environment
because fewer individuals will have genetic abnormalities. Though they may lose skills over
time, they will also be gaining new skills; for example, how to care for patients undergoing PGD.
Resources
PGD has become a resource for certain individuals. Though it is still in a research phase,
individuals can volunteer to be part of the study, and in turn have a PGD developed baby. Since
so many nurses are educators for their patients, they should be informing them about all possible
procedures, including PGD. Nurses are to give the best care possible, but the patient ultimately
ANALYSIS PAPER 8
makes decisions about their own healthcare. It is the nurses job to give all the information and
resources to the patient, enabling them to make an educated decision about their plan of care.
On the other hand, it is important to question how PGD will affect other resources. With
PGD, it is four times less likely that a spontaneous abortion will occur during pregnancy
(Verlinsky, 2004). In addition, there will be a dramatic decrease in the number of children dying
from genetic diseases after birth (Verlinsky, 2004). Assuming PGD is implemented into common
practice, it could increase the population dramatically and create an imbalance between the
amount of resources available and the needed amount of resources to sustain the current
population. If every child survives, will society be able to supply enough resources to sustain the
increase in population? If not, again the lower classes will be affected negatively, which in turn
will contribute to the increasing gap between social classes. It brings into question whether the
survival of the fittest way of life is needed to keep our society in balance. Currently,
approximately 15-20% of known pregnancies end in miscarriages; not taking into account the
number of miscarriages that occurs in unknown pregnancies (National Library of Medicine,
2014). If PGD could decrease that number by even half, it would increase the population
significantly. Therefore, society should take into consideration the effects PGD could have on
their resources and their economic status.
Quality and Safety
When PGD was first proposed, it was believed to increase the quality and safety of many
childrens lives (Verlinsky et al., 2004). This is true in most cases, not only for the child but also
for everyone involved in the childs life. When born with a genetic abnormality, a child needs to
deal with their physical symptoms and other challenges in life, such as continuous doctor
appointments and hospital admissions. In addition, the parents, siblings, friends and family who
ANALYSIS PAPER 9
are involved in the childs care can also experience challenges in life because of the childs
genetic abnormality; for example, working less and having a decreased income because a child
with autism requires more time and attention. The family as a whole could experience a strain in
their relationship because of disagreements involving the childs care or possibly siblings could
feel neglected because of the time and attention the affected child is receiving. It is suspected
that the problems are most always stemming from the genetic disease. Therefore, if the genetic
abnormality is taken out of the equation, the childs quality of life and safety increase as well as
the familys quality of life.
On the other hand, if PGD were used to create a donor sibling, it is suspected that the
quality and safety of one life would increase at the expense of anothers quality and safety.
According to Carmo (2013), when a child is created to be a perfect donor match for a sibling
(hence the term donor sibling), they are expected to make physical, mental, and emotional
sacrifices so that their sibling can have a better quality of life. They must go through a variety of
procedures: giving blood, bone marrow, and even donating their organs (Carmo, 2013). Their
social life decreases because they have to spend countless hours in the hospital to have these
procedures done. Also, since they are giving so much physically, they too must now be careful
not to sustain any injuries that could damage body parts needed for donation. If the child has
already donated an organ, such as a kidney, they must be careful not to damage the only kidney
they have left (Carmo, 2013). In addition, there could be mental and emotional damage that
could occur from being spare parts for their sibling, being created for the sole purpose of
saving another persons life (Carmo, 2013). PGD can significantly increase the quality and safety
of many lives, however it could be at the expense of another. Therefore, one might question; is
one life greater than another?
ANALYSIS PAPER 10
Recommendations for Quality and Safety Improvements
Quality and Safety Education for Nurses (QSEN)
According to Cronenwett et al. (2007), QSEN was created to provide nurses with the
competencies needed to continue improving quality and safety in the healthcare environment.
By using scientific evidence, they will be able to describe what constitutes good care, identify
gaps between good care and the local care provided in their practices, and know what activities
they could initiate, if necessary, to close any gaps (Cronenwett et al., 2007, p. 122). In relation
to PGD, nurses should focus on QSENs quality improvements, patient-centered care, and safety.
Quality improvements. If, or when, PGD is implemented into practice, the procedure
must improve the quality of life for the patient and never decline it. For example, there are cases
where couples would like to choose the genetic abnormality of deafness for their child through
PGD (Whetstine, 2013). Though the couple may not view the genetic trait as a disease, most of
society could. Most individuals would agree that deafness is a disability, and never wish it upon
themselves or their family. Therefore, should the couple be able to choose this genetic
abnormality for their child, forcing the child to live without hearing by no choice of their own?
Or as nurses, are we called to advocate for the unborn children so they are not born with a
genetic abnormality? PGD was first created to prevent genetic abnormalities, not cause them.
Patient-centered care. Nurses must promote patient-centered care, meaning the patient
is included in developing a plan and making decisions (Cronenwett et al., 2007). Though
healthcare workers have been extensively trained in matters of health (such as PGD), it is still the
patients right to be the leader in their own plan of care. Ultimately, the chosen interventions are
being performed on their body, so the patient should have the final say on which procedures are
chosen. Therefore, as healthcare professionals, it is our duty to provide the patient with all the
ANALYSIS PAPER 11
possible plans of care, such as PGD, so that they can make an educational decision about their
care.
Safety. As always, in any procedure, the safety of the patient and everyone involved
should be a top priority (Cronenwett et al., 2007). Each procedure has its own unique safety
interventions to protect the patient and the staff. For example, when individuals undergo surgery,
personal protective equipment is used for both the safety of the patient and the healthcare
professionals; a cold environment and sterile equipment are implemented to prevent infection.
Similarly, unique safety measures need to be developed for PGD to help promote the safest care
possible for both the patient and the healthcare workers involved; for example, implementing
safety standards when handling and testing the embryos in the laboratory.
American Nurses Association (ANA) Scope and Standards of Care
According to the American Nurses Association (ANA) (2010), the Scope and Standards
of Practice outline the expectations for nurses in the healthcare environment. It states the scope
of practice and presents the standards of professional nursing practice and their accompanying
practices (American Nurses Association (ANA), 2010, p. xvii). Nurses are called to use these
standards to guide their actions as they perform each procedure in the healthcare environment. In
relation to PGD, standards 5b, 7, and 15 should be used to guide their actions.
Standard 5b: Teaching and health promotion. Nurses are constantly teaching their
patients about heath promotion strategies by encouraging healthy life-styles, risk-reducing
behaviors, and preventative self-care (ANA, 2010). PGD could possibly become a preventative
self-care procedure by preventing certain diseases and abnormalities from ever occurring.
Therefore, nurses should be teaching the who, what, when, where, and why as it relates to
PGD, while also stating both the benefits and risks to the procedure. Nurses also should be
ANALYSIS PAPER 12
teaching how to use the procedure in promotion of their health. If improperly used, there are
many interventions that can decrease health rather than promote it. Therefore, nurses need to
inform the patient of the facts about PGD, while also educating them on how to use the
procedure in the promotion, not the destruction, of their health.
Standard 7: Ethics. Standard seven calls for the nurse to deliver care in a way that
preserves and protects the patients autonomy, dignity, rights, values, and beliefs (ANA, 2010,
p. 47). More than likely, the ethical issues in PGD will never become completely resolved. As
with abortion, there are going to be individuals who believe it is a human right, while others
believe it is unethical. Each individual patient will have their own unique set of values and
beliefs. Healthcare professionals should consider the individuality of each patient when it comes
to PGD; the offer shouldnt be taken from them, but it also shouldnt be pushed on them either.
Simply, it should be offered as an option and then the patient can make a decision. This is why
patient-centered care is so important, because it also protects the autonomy, dignity, and rights of
each unique patient.
On the other hand, it is questioned whether the babys autonomy, dignity, rights, values,
and beliefs are being protected when PGD is performed. When the parents choose a childs
genetic traits, it is similar to healthcare professionals choosing a patients plan of care. In
addition, PGD could also be depriving the child of patient-centered care as well as not protecting
the unborn childs autonomy and rights (Whetstine, 2013). Therefore, there could be two patients
who have contradicting standards of care; as we preserve the rights of one, we may ultimately
deprive the rights of the other.
Standard 15: Resource utilization. Nurses are called to utilize appropriate resources to
help maintain or develop the patients plan of care (ANA, 2010). As stated before, PGD is a
ANALYSIS PAPER 13
resource in the healthcare environment. Therefore, nurses must assess the needs of the patient
and available resources [PGD] in order to help achieve the patients desired outcomes (ANA,
2010). Each nurse probably has a biased opinion about certain medical procedures, but this
should not reflect in their patient care. Their main responsibility is to give the best care possible
to their patients, which includes providing them with all available information and resources to
promote their health.
Inferences and Implications/Consequences
Since technology is continuing to increase, PGDs ethical issues will also grow with it.
Currently, PGD is being used to prevent genetic abnormalities, choose gender-selection, and
create donor siblings. As more is learned about the human genome, parents may eventually be
able to choose nonmedical genetic characteristics such as happiness, artistic ability, sexuality,
attractiveness, height/weight, life span, intelligence, among others (Whetstine, 2013). The
consequences of selecting nonmedical genetics could have devastating effects on society; for
example, the development of a superior race. Therefore, the possibility of misusing PGD could
prevent future use of it now and in turn, stop individuals from preventing harmful genetic
diseases. On the other hand, the regulation of PGDs technology could provide utilization of only
the potential benefits while possibly bypassing the consequences.
Because PGD is so controversial, healthcare professionals should reflect on their own
personal ethics and morals as it relates to PGD. Since there are similar ethical dilemmas in PGD
as there are in abortions, it is possible that healthcare professionals who have a personal conflict
with abortions could also have one with PGD. Therefore, since healthcare employees are
protected from participating in services that are against their moral or ethical beliefs, hospitals
ANALYSIS PAPER 14
will need to accommodate for these situations. Healthcare professionals beliefs and values are
preserved, just as the patients are protected.
Conclusion
PGD can have spectacular effects from improving the quality and safety in one life to
improving many lives. However, with so many ethical issues, it is questionable whether the
technology should be used at all. The exploration of PGDs ethical issues needs to continue,
although it is unlikely there will be a resolution anytime soon due to the wide variety of benefits
and consequences it offers to society.


















ANALYSIS PAPER 15
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