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Wk 8 Cumulative Of Case 1, 2 And 3 Paper
Case Report Down’s syndrome
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Down’s syndrome
As mentioned earlier, Down’s syndrome is a genetic impairment resulting from abnormal chromosomal attachments. This condition is hard to be treated and can only be managed as the affected individual requires full fledge assistance in daily living under the influence of physical, psychological, social and neurological impairments (Carothers et. al., 2018). Being a genetic condition, Down’s syndrome gives rise to some ethical considerations as well such as communication of just information regarding its treatment and its prenatal screening. This paper will examine the ethical considerations regarding Down’s syndrome screening during prenatal period. How this screening becomes an ethical consideration? This question would be embraced thorough explanation in the next section.
Prenatal Screening as an ethical consideration in Down’s syndrome
Contemplating through the lens of history, we come to know that screening for the Down’s syndrome was first executed in the last 1960s through the process of fetal karyotyping and amniocentesis. During the first half of 20th century, children diagnosed with Down’s syndrome during prenatal period were placed in specialized institutions for care right after birth (Fortier & Wanlass, 1984). At that time, most of the doctors told parents that they could be unable to nurture the specialized needs of their affected children and hence require separate living with particular professional care.
With the passing time, the prenatal testing for Down syndrome continued to become advanced. The American College of Obstetricians and Gynecologists (ACOG) emphasizes the execution of screening tests for Down syndrome to the mothers prior to childbirth. The process of screening encapsulates two levels; prenatal screening and prenatal diagnosis. Prenatal screening encompasses ultrasound and blood test during the first and second trimester of pregnancy that is usually done to indentify the risk of child being born with Down syndrome (Bull et. al., 2011). Approximately 80% of the fetuses can be predicted accurately being born with problem condition.
Numerous ethical and legal concerns are brought by advancements in the prenatal diagnosis of the chromosomal and genetic disorders. Literature is enriched with many instances where selective abortion and prenatal diagnosis was supported by many proponents saying that such procedure link directly to the benefit of both society and the family acting as an excellent constituent of preventive medications (Girdler et. al., 2012). On the other hand, those who consider all forms of life valuable and precious; put strong arguments against aborting affected fetuses. In their view, intellectual and physical impairments are the part of life and do not provide a solid ground to terminate pregnancy.
Ethical Concerns about Screening and Testing of Down syndrome
Some people are in view that prenatal testing for chromosomal and genetic defects such as Down syndrome is a source of immense discrimination against people with such disabilities. They propound that discriminatory attitudes are indicated by selective abortion and a question arises that how the coexistence of the idea—goal of the society is to include individuals with intellectual and physical abilities—with the desire to abort the individuals and prevent the births of those who have the potential to be born with disabilities is possible? Certainly, no one can deny the fact that it is impossible; screening and aborting such individuals before even being born opposes the societal values and threatens the dignity of those who are different from the majority (Carothers et. al., 2018).
Another concern that opponents of abortion possess is the biased education of parents regarding screening and testing and their prospective results. For example, parents who are undergoing screening for the genetic disorders if debriefed about the negative consequences of having a child with Down syndrome may develop strong tendency towards abortion upon getting positive screening tests (Bull et. al., 2011). Inadequate education and misinformation both lead the parents making wrong decisions for their child.
Prospective parents require just and accurate information to ensure better decision making regarding screening and testing of the results. After receiving test results, some parents are left helpless without providing any direction about future that what would be the quality of life of the child after birth and what are the both positive and negative aspects of giving birth to a disabled child. They are not provided with sufficient professional guidance and assistance that supports their decision making ability particularly when they do not know any person with the similar disability and are entirely alien to that term.
Estimations indicate that over 90% of the pregnant women in the United States who are diagnosed to have a baby with Down syndrome through prenatal screening tests select abortion as a preventive measure (Carothers et. al., 2018). Columnist George Will regards prenatal genetic testing as a “search and destroy mission” rather than a method of testing and informing parents about prospective disability (Magyar et. al., 2014). On the other hand, some parents choose to abort their affected child in response to the fear of his dark and discrimination-rich future that may cause irreparable damage to his sense of self. The true problem arises when more and more parents abort their children and create a spell of isolation for the remaining ones. Hence, genetic testing and screening acts as a serious ethical dilemma in the healthcare field.
How genetics can improve care with reference to cost effective practices
As mentioned earlier, genetic testing and screening enables the patients to gain a profound insight about the actual prenatal and potential post natal conditions of their fetus. This screening helps the patient to make rational and careful decisions about their future; either abortion or admission to specialized institutions for afterbirth care (Carothers et. al., 2018). Researchers suggested that individuals with Down syndrome are more likely to have feeding difficulties, dental problems, congenital cataracts, thyroid disease, Leukemoid reactions, otitis media, respiratory infections, immunization problems, motor, language, social and psychological problems. Genetic testing allows the parents to monitor their affected children from the very beginning so that their management skills could be improved (Martin et. al., 2018). Hence, genetics reduce the costs of other preventive and management interventions through testing prior to birth.
Changes in approaches to care when new options warrant for improved outcomes
When prenatal screening is done, parents and medical professionals come to know about the disability from the very beginning and attempt to develop multifaceted intervention strategies just after childbirth (Carothers et. al., 2018). In order to accelerate the development of child at the initial stages of development, speech, physical, occupational and psychological therapies render immensely effective (Magyar et. al., 2014). In other words, diagnosing at early stages enable the parents to learn effective management techniques that best synchronize with the specialized needs of their children and start providing such interventions at appropriate ages. In this way, genetic information helps elevating the quality of life in time- effective manner.
Plan to educate colleagues and patients of Down’s syndrome
In this era of technological advancements, social media is the most groundbreaking and effective platform for carrying educational programs and spreading awareness in the desired audience—parents, researchers and medical professionals (Plough, 2015). Realizing the significance of social media, I would design a campaign in form of awareness groups where more and more targeted audience would be invited to participate in discussions and sharing their experiences with the affected children. These groups would allow medical professionals to convey affective management techniques in form of video lectures to newly diagnosed parents whereas experienced parents would share their experiences with the new ones so that they could make careful decisions accordingly. Researchers would gather data for exploring the evidence-based practices and other issues related to Down syndrome. In this way, social media platform would be used for educating the desired audience.
References
Carothers, A. D., Hecht, C. A., Hook, E. B. (2018). International variation in reported live birth prevalence rates of Down syndrome, adjusted for maternal age. J Med Genet., 36, 386–93.
Magyar, C. I., Roizen, N. J., Kuschner, E. S., Sulkes, S. B., Druschel, C., van Wijngaarden, E. et al. (2014). A community cross-sectional survey of medical problems in 440 children with Down syndrome in New York State. J Pediatr., 164, 871–875
Martin, T., Smith, A., Breatnach, C., Kent, E., Shanahan, I., Boyle, M. et al. (2018). Infants born with down syndrome: burden of disease in the early neonatal period. J Pediatr. 193, 21–26
Bull, M. J. & Committee on G. (2011). Health supervision for children with Down syndrome. Pediatrics., 128, 393–406
Girdler, S., Pillay, D., Collins, M., et al. (2012) ‘It’s not what you were expecting, but it’s still a beautiful journey’: the experience of mothers of children with Down syndrome. Disability and Rehabilitation, 341(18), 1501–1510.
Fortier, L. M., Wanlass, R. L. (1984) Family crisis following the diagnosis of a handicapped child. Family Relations, 33, 13–24.
Plough, A. L. (2015). Building a culture of health: a critical role for public health services and systems research. Am J Public Health., 105 (2), S150–2. doi: 10.2105/AJPH.2014.302410
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