Genetic testing is a type of testing in which changes in a person’s chromosomes, genes, or proteins are determined. The test may be done for several reasons, including to confirm if one has a disease process, is a carrier of a disease process, has mutated genes that may place them at higher risk for developing a disease process, and suggest more testing be conducted (Genetics Home Reference, 2017). Genetic testing allows for a patient to have information related to a disease process prior to it becoming an issue for them. Patients may choose to do genetic testing for a multitude of reasons. Women may choose, while pregnant to partake in genetic testing to determine if they are a carrier of specific inherited disorders or if the baby will be born with certain disorders (American College of Obstetricians and Gynecologists, 2017). Prenatal genetic testing is done by taking blood or amniotic fluid from the mother and running tests to determine genetic disorders. Additional testing such as ultrasound can also be done to determine signs of specific genetic disorders (American College of Obstetricians and Gynecologists, 2017). The results of these tests are then provided to the mother who is given the opportunity to continue with the pregnancy if the tests result in positive findings.
Pediatrics is a very difficult place to work sometimes, especially when there are difficult situations that may come up. A pregnant teenager is one of those instances. I worked, in one specific instance with a Jewish girl who was 15 when she found out she was pregnant. The day she took the home test, she told her mom who refused to believe her and immediately took her to the pediatrician’s office I was at. Her mother was beside herself saying that there was no way that she was pregnant. When the test results came back that she was pregnant and we told the girl, she was very upset. As I was discussing the results with her, she mentioned that her boyfriend thought that she was pregnant 2 weeks ago and told his family. Apparently his family had told him that there were some genetic issues and that if she was in fact pregnant, that she would need to have genetic testing to ensure that the baby wasn’t going to be born with anything.
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As it turned out, the father of the baby was identified as being a carrier of Tay-Sachs disease. His parents had him tested when he was 8, after his little brother died of the disease at the age of 5. Once the girl’s mom found out she was pregnant, she immediately called the boyfriend’s mother. The boyfriend’s mother told her that he about the genetic history and told her to have her daughter tested as well. The boyfriend and his family was insistent on her being tested to see if she was a carrier as they didn’t want the same outcome for this child that happened to the little brother. This became a very heated discussion between the girl and her mother who continued to tell her that she needed to get the testing. She was very distraught over the situation and had many questions. Her biggest question was if she was a carrier what would that mean for the baby? She was also very concerned about having to have an abortion if it was determined that she was a carrier, as she mentioned that her family has told her that she would have to get rid of it if she was a carrier. This was a very difficult situation for all involved.
Principles from the ANA Code of Ethics
The American Nurses Association’s (ANAs) Code of Ethics very clearly outlines the nurse’s responsibilities to caring for their patients. Of the nine provisions, five of them have relevance to this case, Provisions 1 through 4 and 8 have the most relevance to the situation I faced with this child and her mother in that instance (American Nurses Association, 2015). Provision 1 discusses practicing with compassion and respect. Provision 2 talks about the nurse’s primary commitment being to the patient. Provisions 3 discusses promoting, advocating for, and protecting the rights, health, and safety of the patient (American Nurses Association, 2015). Provision 4 in encompasses the nurse’s role in ensure their practice, decisions, and actions are consistent with promoting health and optimal care. Finally, provision 8 discusses the nurse’s role in collaborating with others in the health profession to protect human rights (American Nurses Association, 2015).
Relation of ANA Code of Ethics to Ethical Dilemma
In the dilemma I was faced with, I had a 15 year old girl who was very scared about what was going on and her mother who was very adamant about getting her daughter to do something she didn’t necessarily want to do. In caring for this family, I did what I could to be compassionate as well as respectful while providing care at the highest level possible (Provision 1). I listened to the mother’s concerns as well as the child’s. In the end, I discussed with the mother that her daughter, although only 15, was now legally capable of making her own decisions. While allowing the mother to discuss with her daughter the issue as well as the necessity to get tested, my ultimate responsibility was to the patient. When she became very distraught at her mother’s persistence, I asked the mother to step out of the room and provide her daughter with some privacy (Provision 2). Although the child was only 15, she was legally allowed to make her own choices.
I provided her with the necessary information related to the situation and explained to her that she was able to make whatever decision she wanted to. I worked with the patient to get her a referral to an OB/GYN as that provider would be able to provide the specialty care that she would need and also order the necessary testing if that is what she decided she wanted to do. I provided her with all of the education she needed to make the best decision for herself and her baby. I also worked with her mother, educating her on the same things, so that she was aware that the decision was ultimately up to her daughter (Provisions 3 and 4). Because the child came to the Pediatrician’s office, I worked to get her a referral to an OB/GYN to provide specialized care that our office didn’t have available. I also worked with a contracted social worker for our office that would follow-up with the child and her mother to determine if there were any additional needs that they had (Provision 8).
Outcome of the Dilemma
The child had come in a few months later, with her mother, while still pregnant, to have a physical done for school. We had discussed the pregnancy and she told me that although both her family and her boyfriend’s family were very persistent on her being tested, she didn’t go through with it because she felt as though if she knew she was a carrier, she would constantly worry about the baby before it was born and that she was told undue stress could harm the baby. She mentioned that she would get tested after the baby was born to know for sure. She also mentioned that if the baby was born with the disease, then together their family’s would do everything that they could to take care of the baby providing the best life possible for as long as possible. She said that she felt empowered to make that decision based on the education that she was provided with in the beginning as well as information that she received from her OB and the resources that the Social Worker had provided her with.
Resources to Assist with Ethical Dilemmas
The clinic was equally owned by the Physicians that worked there and they had an outside ethics board that was in place in the event that an ethical issue came up. It was mentioned that they had only had to consult with them one other time on an issue, however, they didn’t provide any details. It was noted in discussion with the physicians that although the child’s potential status as a carrier was one of concern, it was not the place of the medical professionals to make her do anything that she didn’t want to do. It was also not our place to take the side of those wanting her to get tested because of the knowledge we had on the disease process and how it could ultimately affect the family in the long-run. Our job was to care for her with the highest level of care possible, help her work through her fears, educate her on all of the potential outcomes, and ultimately respect her wishes.
