Preimplantation Genetic Diagnosis: The Role of the Doctor during the Decision Making Process

Preimplantation Genetic Diagnosis: The Role of the Doctor during the Decision Making Process

By Kristen Rusas

Table of Contents

• Abstract
• Introduction
• Factual Background
• Principle of Autonomy: Regarding Patients
• Role of the Doctor
• Perceptions of the General Public
• Conclusion

What information should doctors be allowed to give their patients? There are many rules that restrict doctors from sharing their personal opinions through dialogue, body language, and tone of voice.  However, patients may expect a doctor to share their recommendations. since they are believed to be experts on their field of study.  Preimplantation Genetic Diagnosis (PGD), which allows doctors to identify certain diseases and disabilities in embryos, can lead to situations that can cause added stress for both the doctor and the patient.  In addition to the doctor, society will have a tremendous influence on the decision that parents make.  Although it is ultimately the parent’s decision regarding which embryo is implanted, the opinion of people who will be involved throughout the child’s life will have an effect on their choice of embryo.  This workshop will also explore a survey that was conducted within the Kent Place School community to explore opinions regarding PGD and the role of the doctor.

A patient is sitting in a hospital room waiting to hear about the results of their blood test that will determine if they are capable of conceiving a child. The doctor walks in, and their face immediately turns white.  When the doctor starts speaking, their tone of voice is very somber, but at the same time you can tell that they are trying to be comforting.  Then, the patient hears the words “breast cancer” and their mind immediately shuts off.  Suddenly, they are not listening to the doctor anymore and millions of questions are zooming around inside of their head.

In the situation mentioned above, the doctor did what is perceived to be the right thing.  He or she was trying to comfort the patient and then explain to them what the situation was and what steps the patient could potentially take to get better.  Now imagine the same patient with the same situation and diagnosis.  The doctor walks into the room and does not make eye contact; he or she just stares blankly at the wall.  The doctor just begins talking.  The doctor is treating this patient like words on a chart and not a human being who has feelings.  

Which doctor would you rather have?

I hope that you picked the first doctor, because the second one is not following the Hippocratic Oath, which is the oath that doctors take once they graduate from medical school.  The patient simply went into the office to see if they could conceive a child, and they walked out with the diagnosis of breast cancer.  The first doctor most likely got to know the patient better and opted to give them hope for the future.  Since the patient was trying to conceive a child, the doctor tells her about a technology called Preimplantation Genetic Diagnosis (PGD).  The doctor explains that if the patient is able to successfully beat her cancer, she could have a child, and with the help of PGD, that child will not be in danger of developing breast cancer as well.

This paper will address the different viewpoints of people who are involved in the Preimplantation Genetic Diagnosis (PGD) process, such as doctors and parents.  The rules that doctors should follow, the Hippocratic Oath, and how it compares to the Principle of Non-Directive Counseling are explored in this paper.  Regarding parents, there is a section on how they can exercise their autonomy in certain situations, such as when they are using PGD.  Also, I conducted a survey to learn what the Kent Place School community thinks about using technology, such as PGD.  The survey helped me gain insightful information into how people feel about creating embryos in a lab and how some people are very skeptical of technologies in this modern scientific world.

This paper considers the best interests of the unborn child who may be susceptible to Huntington’s disease, Breast Cancer, and Cystic Fibrosis.  After reading the section about each disease, you should ask yourself if you would decide to have your child be born with that disease or would you search for an alternative route, such as PGD.  It should be taken into account that there are different variations and severities of diseases and disabilities that can affect any human being.  Also, not all of the diseases explored in this paper have the likelihood of developing 100% of the time, even when the patient possesses the gene that codes for the disease.  It is also important to remember that no two embryos are the same.

This paper will not discuss whether or not PGD is ethically permissible in certain religions; rather, it will focus on whether or not PGD is ethically permissible regarding people’s first instincts and personal family values (survey).  I will also not discuss what happens or should happen to the discarded embryos after they are chosen to not be implanted in the mother.  Instead I will focus on why parents have the right to use PGD and how doctors may influence that right.

Preimplantation Genetic Diagnosis (PGD)

The process of PGD: 

1. A woman’s eggs are fertilized with the sperm of the selected father in a lab.  This creates several embryos that will later be tested for genes that code for certain diseases.
2. A single cell is removed from each embryo, after about three days, and then tested for biomarkers that code for the diseases or disabilities that the parents choose.  A biomarker is “a measureable substance in an organism whose presence is indicative of some phenomenon such as disease, infection, or environmental exposure,” (Oxford Dictionary).  Only certain biomarkers can currently be identified since the genes that code for certain things, such as personality, have not been discovered yet.
3. The couple then must choose which embryo(s) they would like to implant.  This can be a single embryo or multiple.
4. The mother than proceeds with the pregnancy.

PGD gives families who have a history of having or being a carrier for certain diseases or disabilities an opportunity to decrease or eliminate the risk of their child inheriting the particular gene that causes that disease or disability.  This selection process may also prevent future generations of a particular family from having to worry about developing this same disease or disability, since the gene can be eradicated from the genome.  Some feel that, PGD can be used to create the best possible life for the child that is being created.

There is a big difference between PGD and prenatal testing.  PGD takes place before a pregnancy begins, so the unborn child is simply an embryo in a petri dish.  Prenatal testing is when the embryo or fetus is already inside of the mother’s uterus and the only way to end the pregnancy would be to consider abortion.

In order for PGD to occur, the embryos must be created in vitro, which means outside a women’s body.  It is projected that people are more opposed to abortion, most likely because the child is already in the mother’s body.  The embryos outside the body might not have the same relationship or bond with the mother as the embryo that has already been implanted (Savulescu 4).  On the other hand, every embryo is still composed of a sperm and an egg no matter where or when it is created.  An embryo cannot develop into a fetus until it is implanted into the woman who is carrying the child until term, so the embryos that are not implanted will never fully develop into children unless they are implanted at a later date.

Huntington’s Disease (HD)

(Information found at www.hdsa.org)

HD affects each victim differently, even if they are in the same family.  HD is described as a chorea disease, which means that it is a disease that breaks down the nervous system and is characterized by jerky, involuntary movements.  There are three different stages for HD patients.  The first stage begins with subtle changes in mood, movement, and cognition, so it is often difficult to self-diagnosis HD in this early stage.  The second stage includes the loss of the ability to work, drive, and perform daily functions; generally at this time, the person affected would apply for disability.  In the late stage, the person affected will require help in all aspects of life.  Unfortunately, they will lose the ability to speak and respond, but they are still able to comprehend things around them.  It is important to remember that these symptoms are based on data gathered from previous people who were affected with this disease; it is not certain when and how these side effects will present themselves.  Also, someone may not show symptoms of HD for years after they are diagnosed.

HD is a family disease, which means that it is caused by a mutation in one’s genes that can be inherited by any child from his or her parent, as long as the parent possess the same gene mutation.  Everyone is born with the Huntington gene, but the disease is caused by an abnormal copy that is inherited from one or two parents.  To be absolutely clear, only a person who is born with the abnormal gene can get the illness and pass it on to their child.  The gene mutation that causes HD is dominant.  A dominant gene will always be represented over a recessive gene.  If someone is born with only one gene that codes for HD they will display signs of the disease because it only takes one abnormal copy of the gene for someone to develop HD.  As a result, if a mother or father develops the disease in their forties or fifties, it is very likely that their child will have the abnormal gene as well.

A test has been created to find the gene that codes for HD.  This test is extremely accurate because if the patient has one abnormal copy of the gene it will immediately be recognized as HD.  The test gives a definite positive or negative response regarding whether or not the patient will develop HD during their lifetime.  Although the test can give information regarding someone’s diagnosis, the test cannot determine symptoms and when the symptoms will arise.  This test is used during PGD, which is why PGD would be appealing to families that have a history of this disease in their family.

I chose to include HD in my research paper because it is a dominant disorder, so the chances of inheriting this trait are greater.  In addition, the test is definitive and there is no cure for HD.   Also, it is a disease that affects people around the middle of their lifetime, thus shortening their life, and it is often a long, painful process to go through.

Breast Cancer (BC)

(Information found at www.breastcancer.org)

Cancer is a disorder when body cells lose the ability to control cell growth.  Cancer cells do not respond to signals that regulate cell growth, and therefore, the cells divide uncontrollably and form a tumor.  A tumor is a mass of cells. (Miller, Levine 289).  BC is the uncontrolled growth of breast cells.  A tumor can be benign or malignant; BC refers to a malignant tumor that has developed from cells in the breast.  One in eight women living in the United States of America is expected to develop BC and out of those women, four-hundred thousand are expected to die per year.  The numbered of people expected to die has dramatically decreased as compared to previous years.

There are many different stages of BC, ranging from Stage O, which is when the cancer cells remain inside the breast duct, without invasion into normal adjacent breast tissue, to Stage IV, which is when the cancer spreads to other parts of the body. 

Like HD, BC is an inherited disease.  The BRCA gene is one of the genes that codes for BC.  It is expected that about eighty five percent of BC patients have a history of the disease in their family.  This makes PGD more appealing to families that have a history of BC is their families.  I would like to emphasize that there is not a 100% chance of developing BC if one possesses a gene, such as the BRCA gene, that codes for BC.  Any action that is performed between the discovery of the gene in someone’s gene sequence and being diagnosed with BC would be considered preventative medicine.

The treatment of BC depends on where the cancer begins and when it is found.  Although there are treatment options that can help slow down the process of the cancer spreading, there is not a cure for the disease.  Also, if BC is eradicated from the body, there is still a chance that the disease can come back and the treatment process will have to be initiated all over again.  Chemotherapy is one of the most popular options for fighting back against BC.  Chemotherapy uses medicine to weaken and destroy cancer cells in the body.  It is a systematic therapy that affects the whole body by going through the blood stream.  Chemotherapy can cause new health problems and concerns that are not related to the cancer itself.

I chose to include BC in my research because it is a well-known disease that affects many people in the world and although a lot of men and women survive BC, many others are not so lucky.  In addition, there are doctors and researchers who are constantly looking for a cure for BC and it is not known when a cure to this disease will be found.  Also, if one tests positive for the possession of a gene that codes for BC there is not a 100% chance that they will develop BC later in life; their chances are just increased, which may affect the choices one makes when considering PGD.

Cystic Fibrosis (CF)

(Information found at www.cff.org)

CF is a life-threatening disease that primarily affects the lungs and digestive system.  About three-hundred thousand children and adults have CF in the United States of America, while about seven-hundred thousand have it worldwide.  CF is inherited from a patient’s parents through an abnormal copy of their genes.  To be diagnosed with CF, a person must inherit two copies of the autosomal recessive gene; in other words, a person must receive an autosomal recessive gene from both parents.  A person who only possesses one copy of the gene is called a carrier because they will never present signs of CF during their lifetime.  If a carrier has a child with another carrier there is a 25% chance the child won’t be affected at all, 50% chance the child will be a carrier, and a 25% chance the child will be affected and show symptoms of CF.  If a carrier has a child with someone who has CF, there is a 50% chance the child will be a carrier and a 50% chance the child will develop CF. 

CF is the result of a defective gene, called CFTR.  The protein product causes the body to produce unusually thick and sticky mucus that clogs the lungs, leads to life-threatening lung infection, obstructions of the pancreas, and it stops natural enzymes from helping the body break down food and absorb vital nutrients.  There are many symptoms that range from salty-tasking skin to poor growth and slow weight gain, in spite of a well-balanced diet.  In 1950, few children with CF lived to attend elementary school, but today the life-expectancy is in a patient’s early 40s.  The patient’s life expectancy depends on the severity of the disease and the age of the diagnosis, which directly effects the time treatment is started.  Today, people with CF are able to live healthy lives, pursue careers, get married, and have their own children.  

Treatment for CF patients varies because CF symptoms can differ widely from person to person, and as a result, there is not one specific treatment plan.  Treatment may require therapy that addresses problems affecting different parts of the body; for example, the lungs and digestive system. Typically, doctors perform some form of airway clearance to help loosen and get rid of the thick mucus that builds up in the lungs.  The patient may also be required to take inhaled medications and enzyme supplements to assists in the absorption of vital nutrients.  Unfortunately, a lung transplant will not cure CF because the defective gene that causes the disease permeates throughout all of the cells of the body, not just in the lungs.

At this time, there is no cure for CF, but there is a lot of research surrounding an experimental drug that will hopefully eradicate CF.  The US Food and Drug Administration approved Kalydeco (ivacaftor), which is the first drug that has been tested on a small group of people.  It is too early to say whether this drug will eventually become a cure or not.  The Cystic Fibrosis Foundation is still participating in cutting edge research aimed at finding for a cure for this disease.

I decided to include CF in my paper because it is a disease that may have a cure in the near future.  If parents wish to select an embryo that is not predisposed to the disease, they may be discarding embryos that would have potentially benefitted from a curative drug or treatment.

Parent’s Decision

The parent’s principle of autonomy claims that couples should be free to decide when and how to procreate, and what kind of child to have.  These rights are honored by the use of PGD because parents are able to choose the embryo with the genes they want and do not select the embryo with undesirable genes.  If this parental decision was the only factor, it would imply that couples might have a reason to choose the embryo with a predisposition to asthma, for example, if for some reason they wanted that.  A doctor could potentially decide that choosing a child with asthma is child negligence, so the parents would either have to find a new doctor or implant the embryo without a predisposition to a disease or disability.  The doctor can either decide not to participate and ask them to find another doctor or they could report the parents for child negligence.  

When choosing an embryo, it is important for the parents to remember that the chosen embryo is a whole different person than the embryo that is discarded.  Each embryo chosen could potentially have different talents and different opportunities that may or may not be affected by being predisposed to different diseases or disabilities.  For example, there is Embryo A, who does not have any biomarkers that indicate asthma, and Embryo B, who does have a predisposition to asthma.  If Embryo A is the embryo that does not have the predisposition to a disease such as HD, but will eventually become a criminal, the parents do not know that he or she will become a criminal since it cannot be tested for.  But, Embryo B, who does have the biomarkers for a disease could grow up and become a scientist, but the parents would not know that either.  This shows that when choosing an embryo there are many other factors that can play into the final decision that the parents do not know about.  There are no biomarkers that code for criminal or scientist, so there is no way to know which child will have the better future.  Although PGD can help parents select for the child who may not develop a certain disease, there are other factors that as humans, we simply cannot control, no matter how hard we try.

Best Interests of the Child Principle

During the process of PGD a couple has the opportunity to decide which embryo they  think will produce a child who can have the best life possible.  The phrase “the best life possible” is a statement that can hold many different meanings based on the society that the child will live in and the culture that the society embodies.  This presents the issue of quality vs. quantity.  If the quality of someone’s life is heightened, is that a good reason to shorten it, or vice versa?  Could thirty good years be enough to equal seventy bad years?  This question directly correlates to HD.  There is the shortening of life factor, but there is also the ten years at the end that is painful and dehumanizing.  Personally I believe that they do.  This can draw a parallel to someone taking every opportunity that is given to them versus someone hiding in the corner and not trying to better themselves.  The person that takes every opportunity is going to have some successes and some failures, but they are most likely to regret less.  The person that hides inside their shell won’t have failures, but they will also not have successes.  They will not understand what it is like to be disappointed, but they also will not know what it is like to be so happy and excited that they cannot stop smiling for hours on end.  We are so willing to protect ourselves from the unexpected because not knowing protects us from being hurt, but if you have to get hurt before you are on top of the world, would you find yourself more willing to be exposed to the bad?  If our generation is willing to get hurt than why are we deciding that future generations should not be hurt and instead live in fear of the world?  For example, if an embryo is born without CF, their life can be boring and not filled with excitement.  But, if an embryo with CF is born, the challenged that they faced and had to overcome can shape who they are as a person and make them strong and independent.

The Role of the Doctor is important because doctors are required to honor the patient’s autonomy and let them make their own decisions, but at the same time think about the child’s best interest.

Hippocratic Oath

The Hippocratic Oath has been used during graduation ceremonies in Medical School for the last five-hundred years.  It is still a time-owned tradition that many medical students find rewarding.  They know that every single doctor that has gone through medical school has taken the oath, so they are now a part of an amazing and intelligent tradition and group of people.

The original Hippocratic Oath begins with promising the God Apollo, who is the Greek God of Healing, that he or she will fulfill the role of the doctor to the best of their best abilities.  It is apparent that this oath was written in the time of the Ancient Romans because of these opening lines.  The Hippocratic Oath also instructs future doctors to hold the ones who taught them how to perform required tasks as high as they would hold their parents.  This results in the process of doctors sharing their knowledge to the future generation of doctors, but this is only allowed to be done after they have taken the oath.  This demonstrates the importance of the tradition of physicians helping others.  The quote “…for the benefit of the sick according to my ability and judgment,” (Hippocrates) shows that the opinion of a doctor was the best thing to have because they were educated and experts in whatever it was they were specializing in.  It also points out that no matter what the doctor thinks should be done, a procedure or test must be conducted in order for the patient’s health to improve.  The Romans believed that physician assisted suicide was never a means of improving someone’s situation.  Death was not a way to help someone get rid of their pain because if there was something that could be done, it should be done.  Another concern for doctors in history was for their practice to be in line with religious teachings.  They were instructed to protect their job by not committing anything that would be considered sinful.  This also included conducting unnecessary surgeries that were nothing but experimental; the surgical knife was not to be used unless it was the only option.  It was expected that what the patient told the doctor was told in secret.  A doctor was not allowed to share any of the details he was told with anyone no matter what the circumstances.  It was also believed sinful to share information without the patient’s consent.  The main purpose of the oath is for doctors to practice medicine that benefits both them and the patient and for doctors to remember that medicine was designed to be an art that everyone enjoys.  Performing miracles on patients and helping them to the best of their abilities was vowed by the doctor to be the most enjoyable and worthwhile thing that they do.

A covenant is described as a formal agreement, promise, or contract by the Oxford Dictionary.  The modern version of the Hippocratic Oath is described as a covenant between more than two people instead of a promise to the Gods as it was originally written.  The modern Hippocratic Oath shares the same value of passing along knowledge as the original Hippocratic Oath did, but does not require the next generation of doctors to regard past doctors as they would their parents.  The doctors must vow to not over treat their patient and not be influenced into making decisions that they are not comfortable with.  Doctors must also remember that patients often simply just need someone to talk to and they need someone to understand.  It is important for doctors to not jump to conclusions and immediately rely on prescribing medication to patients.  It is stressed that, as a doctor, they do not have to know absolutely everything; it is suggested that the doctor asks their colleagues for advice, when needed, as long as there is consent from the patient.  This can happen when a doctor does not understand a certain diagnosis or result, or if a doctor is not a specialist in a certain field, thus having to ask another doctor to step in and take over the treatment or procedure.  It must be taken into consideration whether or not a patient would like their information to be shared with other doctors.  A doctor is not allowed to share any information regarding a patient without their consent because of doctor-patient confidentiality.  Doctors realize that they have the power to save a life, but they also realize that they have equal power to end a life.  It is important that a doctor remembers that deciding to end one’s life has major emotional impacts and that it should not be taken lightly and not be decided quickly. “Above all, I must not play God,” is the single most important line in the Hippocratic Oath regarding preimplantation genetic diagnosis, because this is the biggest argument against PGD.  Some believe that choosing an embryo that does not possess a diseases or disability is acting like God more than God had intended people to.  The modern Hippocratic Oath introduces a new idea of treating the patient versus treating a certain disease.  For example, this would be a situation where a doctor is treating a patient with BC like any other patient with the same disease.  Each patient has a different story that the doctor has to familiarize themselves with in order to treat them the way the patient needs them to.  The diseases or disability that the patient came in for obviously influences the way they live their life, so it is important that this can influence their family, health, and economic stability.  The modern Hippocratic Oath concludes similar to the original Hippocratic Oath in that it emphasizes that being a doctor is something that one should enjoy instead of dread.  It points out that helping someone in need of their expertise should be performed with complete happiness.

Principle of Non-Directive Counseling

The Principle of Non-Directive Counseling states that Doctors should only provide information about risk of a certain procedure and other options available to reduce that risk.  This principle may have different reactions from people.  Generally, when we think about doctors, we think that they should give us options and then decide for us which is the correct option for our situation.  We most likely believe this because doctors are supposed to be the best in their field of medicine, and they are supposed to have the most knowledge, so we should trust them and their opinion.  However, the Principle of Non-Directive Counseling prohibits the doctor from deciding for the patient which treatment option they should pot for.  This shows that the oath of the doctor and patient expectations do not align.  Now that the Principle of Non-Directive Counseling has been established, many new questions may arise regarding how doctors are expected to act around their patients. 

Do doctors present information in a way that is discreetly persuasive toward the patient?  For example, a doctor may intentionally present options in a certain order, or they may put emphasis on a specific option, or they could give their patient more information about certain options and not enough about others.  There are many ways that doctors can show their bias, whether is be subconsciously or on purpose.  A doctor is expected to be aware of their tone of voice and body language while speaking to patients.  A way that could eradicate any form of bias could be to give the patient pamphlets about all of their options or have research already printed out for the patient to go through.

Do doctors tell their patients what they think is best, thus altering the way the patient thinks?  A doctor’s opinion could be very influential to a patient since the doctor is expected to be educated in their specialty.  It is important for the doctor to remember that they are not the one that has to live with the decision for the rest of their lives; the patient has to be confident that they are making the decision that is best for them, because the decision could change the rest of their life for better or for worse.

How well does and should the doctor know about the patient’s situation?  If a doctor knows a patients situation very well, he or she may feel more inclined to give their personal opinion and alter the patient’s decision even more because the patient trusts the doctor more.  On the other hand, if the doctor does not know the patient very well, he or she may leave out an option that should be taken into consideration.  It is important for the doctor to remember that they are not dealing with a couple of words on a chart, they are dealing with a human who can pick up on subtle hints and be very influenced by them.

These rules are important because if there are no rules then people will not be able to make their own decisions because doctors would always be making decisions for them. 

Survey

For my survey, I asked the Upper School Kent Place Students and the Kent Place staff from both the Middle School and the Upper School questions about when they would choose to use technology such as PGD.  I decided that it would be beneficial for my end results if I did not disclose that the technology was PGD because I did not want the people taking the survey to have any predisposed ideas about the technology that could skew the results.  I first wanted to get a baseline of how likely each person taking the survey was to have a child at the age of thirty.  Therefore, I could determine how each time they were given new information regarding their future child changed their idea of parenthood.  

Next, I described a disease similar to Huntington’s disease; I did not mention the name again, so that the information would not be tainted.  The second question asked how likely the person taking the survey was to have a child now that they learned about their child potentially having this disease.  For 90% of people the likelihood of them having a child decreased when they found out about the disease that their child could possibly inherit.  The third question asked how likely the person taking the survey was to try and conceive a child once they received information regarding PGD; 73% of people answered that they would try to conceive a child now that they know about the potential benefits of PGD.

Another interesting discovery had to do with the influence of a doctor.  More than 50% of people surveyed expect doctors to give the patient their opinion to help guide them down the path that the doctor thinks is best.

Quotes from the Survey:

• 18-20 year old female – unsure of any history of diseases or disabilities – 1^st answer: 2, 2^nd answer: 2, 3^rd answer: 4 — “I chose this answer because I would feel more comfortable if I knew that my child would not be born with a disability.”
  • This person did not feel comfortable having a child with a disability and decided that it would be best for them to be aware of what could possibly happen in the future.

• 18-20 year old female – has a family history of diseases or disabilities – 1^st answer: 3, 2^nd answer: 1, 3^rd answer: 2 – “I think I would rather adopt.”
  • This person felt as though there were other options to have children and that they did not just need to rely on science to allow them to have a family without challenges.

• 50-59 year old female with 3 children – no family history of diseases or disabilities – 1^st answer: 5, 2^nd answer: 1, 3^rd answer: 5 – “Why would you want to conceive a child knowing you can pass on a disease that will limit their quality of life when modern science can help.  Also, by doing so, it will eradicate the disease.”
  • This person is thinking about how PGD will not only help their children, but will also keep future generations from having to make decisions like these.

• 18-20 year old female – no family history of diseases or disabilities – 1^st answer: 5, 2^nd answer: 3, 3^rd answer: 4 – “I would as a parent, only want is best for my child and if I can have a child that is able to fully fulfil their life – I would do anything to have that.”
  • The question of what is a fully fulfilled life is brought up with this explanation.  There can be different definitions of a “good” life from different people, so it is important that the future parent knows what kind of life they want for their child.

• 17 or younger female – has a family history of diseases or disabilities – 1^st answer: 5, 2^nd answer: 1, 3^rd answer: 1 – “I wouldn’t want to create embryos in the lab, and kill the one that was healthier, that seems wrong to me.”
  • This person does not feel like creating  a child in vitro is natural, so it is understandable that they would not feel comfortable using PGD.

After my thorough research, my recommendation for doctors would be to be aware of the patient’s situation and be aware that they are dealing with different things so it’s important to be personable.  If I had to give a recommendation to the patients, I would say that they must make themselves knowledgeable about their own situations and not to rely solely on any doctor’s opinion.  The patients are the ones that have to live with the decision that they are making, so they must make the one that is right for themselves.

During the decision making process, the parents must exercise their right to make their own decisions and poses the autonomy to have a child and decide what the health of their child should be.  Whether or not to utilize the technology of PGD is also a decision that parents must make.  Also, it is important that doctors follow the rules laid out for them in the Hippocratic Oath because without these guidelines, there would not be order or stability in the medical field.  This does not just relate to doctors dealing with reproduction, this is true for any field of medicine in ay doctor’s office.

The findings from the survey introduce new questions about who is fit to be a parent of a child with a disability and who should not have a child.  It also introduces the question of whether or not people are educated about different diseases and how opinions would change if they were educated about them.  I would also like to conduct my survey with more people than just in the Kent Place School community.

I hope that this paper helped inform the reader about the many options that exist when having children who have a predisposition to diseases and disabilities based on their genome and what the roles of the doctor and the parents are during the decision making process.