Prenatal Testing and Screening
Prenatal testing and screening have raised the number of ethical issues related to diagnostic testing in relation to special circumstances of pregnancy. The concerns related to the diagnostic testing involve greater ethical concerns for the parents with disabilities that need to be effectively addressed. It is debated that the prenatal diagnosis in contemporary society has enhanced the testing process to make right decisions about the pregnancy. However, there are number of concerns that evolve within our society concerning the cultural, religious and other social pressures.
In the case of people with disabilities it is argued that the people often face difficulties in making right decisions. The rights of disability are debated in courts, medical institution, physicians and educators because of the parenting testing right. The advising and counseling for the prenatal testing is significant and should be addressed through the right decision. Disabled parents are more sensitive regarding the well-being of their offspring.
At the same time, the decision regarding abortion for mothers is difficult because of their emotional attachment. On the other hand, legislative courts have put pressure on doctors that they should prevent births of children with abilities. These concerns have raised a number of ethical considerations that should be compensated. People with disabilities have legitimate worries about the way in which prenatal screening is handled in our culture. The present argumentative paper shares opinions and perceptions of different authors related to prenatal testing and screening regarding ethical consideration.
Parents with the disabilities seek healthy development and growth of their children. However, there is increasing pressure on the government by doctors to prevent the birth of children with disabilities. These factors have discouraged parents with disabilities to take prenatal testing and screening. Also, it is identified that the parents with disabilities are not adequately advised and counseled to make the right decisions for their pregnancy.
One of the dominant principles of healthcare is non-directiveness has led to unclarity in the results. Thomas (2015) highlights regarding some of the disabilities that are not being effective communicate to the patient during when they are conducting prenatal testing. Giving the example of Down syndrome in which the parents are counseled in an effective way.
In prenatal screening, it is important to have clarity and coherency during counseling. However, the doctors do not make use of clear language during the screening. It increases risks for the parents to make wrong decisions regarding other risk discourse that are related (Thomas, 2015). In most of the cases, the parents argue that they are not effectively communicated regarding health condition and consequences that may be related to the birth of the child.
At the same time, emotional attachment to a mother with the child has a strong binding that often makes them not to accept the decisions regarding abortion. Hence, in certain complicated cases the mothers are not directly informed regarding the health of the child. In order to handle such situations, doctors are instructed to talk in a way that it does not cast an extremely negative impact on the condition of mothers.
On the other hand, Qiao (2015) in his research outlines that there is less relevance of the effectiveness of genetic counseling profession (Qiao, 2015). In the research, it is emphasized that the disability is considered as a burden because it requires more demand for healthcare service. These births can lead to numerous barriers and inaccessibility and inadequate equipment as well as intangible knowledge and attitudes. There are different movements throughout the time that have emphasized on misleading of the scientific and medical elite that needs to be managed effectively.
In 1920, in the US there was a eugenic movement that was established for scientific and medical elite that have uphold Supreme Court decision that is considered as an attempt to eliminate the disability from the population. The contradicting views among medical professionals and the parents with disability have led to creating conflict in the views of the patient and the doctor. In some of the cases, the medical professional feel pity and misguided for the parents with the disability that have decided to give the birth.
At the same time, there are other related ethical issues of understanding consent and giving right direction is one of the major concerns in the medical practices that have raised number of questions for parental testing. Parents with disability complain about the contradicting views with their doctors that have often made them discourages to take parental screening for their child.
In the society, different views regarding parental screening have been criticized, among it one of the extreme contradicting views is that the provisions for the accurate information are questions. It is because the parents do not agree with the provision for he accurate information that is provided through parental testing. Studdblefield (2007) argues that the one of the major difficult decisions for the parents with the disability is to make the right choice (Stubblefield, 2007).
Often the attitudes and behaviors of the medical professionals remain to be one of the major contradicting points that need to be effectively addressed through ethical intervention. The code of conduct for medical professionals needs to be flexible and supportive regarding the decisions for parental screening. Most of the parents with disability complain that their counselor or physician have no right to force parents to make the decisions regarding their continuation of pregnancy, termination of giving birth to the child or adopt a child.
Similar arguments are raised by Bauer (2011) in which the non-directiveness has become one of the major reason that has misled and confused parents to make the right decisions for their child taking parental screening (Bauer, 2011). The patients complain that physicians and professionals do not work with the prospect for informed consent process that is required for the prenatal screening and diagnosis.
Moreover, the other main complication that occurs that has increased the doubts of the parents with the disability is because of the unbiased informational packets regarding genetic disabilities. The results of the prenatal screening does not assure a 100 percent result due to which the expectation and making the right decision. Stubblefield (2007) claims that the attitudes of the professional in the case of parents with disability are often rigid which is associated with the unexamined attitudes of professionals (Stubblefield, 2007).
In prenatal screening, the patients share their experience in which they have to feel inferior or helpless in the making the right decision regarding their pregnancies. Stubblefield (2007) raise different criticism that is associated with the society. It is evident that the people belonging from black and white racial background have different perception regarding disability and their decisions for birth.
Among the people that belong to White background have a concept of feeblemindedness that emphasizes on the normal cognitive functioning. Under this definition of feebleness, it is argued that the White people are more inclined to ensure that the offspring should have normal or above normal cognitive ability. They have a view that their babies should be born with no disability and they should be able to live and grow like normal babies.
On the contrary, the people that belong to black/other racial backgrounds have not shown different perception for feebleness. These practices have also raised concerns regarding feeble behavior and pity attitudes towards parents with disabilities to take the screening test. There is a dominant concept among white society that they have the ability to civilize and cognitive ability is a capacity to make contribution to build a civilized society. Since, if they lack to produce a generation that does not meets the cognitive ability they would fail.
A similar perception is developed in the mind of the professionals in our society. Hence, taking prenatal screening parents with the disabilities have to encounter several questions to justify their decisions to continue their pregnancy. Most of the pregnant parent with a disability claim that the attitudes of the professionals were reluctant there is a great racial discrimination that the patients taking prenatal screening have to encounter.
One of the other main ethical concerns that signal the issues for taking prenatal screening and diagnoses is with regarding the discriminatory behavior that is governed by the social norms and values (Stubblefield, 2007). It is clearly distinguished that the within white racial society the perception of proving themselves with the higher cognitive function makes them responsible for the civilization. Hence, it therefore integrated that the brain functioning needs to be either normal or above normal to continue with their social role (Stubblefield, 2007).
The similar perceptions are carried in the mind of the healthcare professional that counsel patients with disability. There is a genderized concept that mainly prevails with the white racial society that needs to be effectively aligned in the development of the ethical framework for prenatal screening and diagnoses for the patients with the disabilities (Stubblefield, 2007).
It has become one of the major barriers for the parents to take disabilities as they fear that they have to terminate their pregnancy. Also, it is evident from different views of the respondents who have shared their opinion regarding prenatal screening that there is significant link with the race to class and gender that has made the counseling and suggestions of the healthcare professional biased.
Most of the parents that have low income are emphasize and counsels by their doctors to discontinue with their pregnancy regardless of their decision. Similar views are evident by the parents belonging to white racial background. They perceive that the prenatal diagnoses and screening involves greater bias decision of the patients. Their doctors and medical staff does not make any efforts to improving of the living of the patients. The mental function and social integration is also a dominant factor that is affecting the conduct of prenatal screening and diagnoses.
In most of the hospitals fetus that is diagnose with any intense abnormality is not given enough attention. In the article published in “The Atlantic (1985) shares the similar opinion of patient who gave birth to the child who was diagnosed with the down-syndrome who was not given proper treatment at the hospital for their treatment (The Atlanic, 1985). In some of the cases social pressures influence that parents. These pressure force parents to think differently and most of them go ahead with the decision not to continue with the pregnancy and abort life of unborn..
In the case mentioned in the article The Atlantic the refusal of parents was made for the child to continue with the further treatment to save the life of the patient. It was noted that down syndrome affect quality of life. Besides of the recommendation of the doctor, the parents did not agreed to continue with the treatment of the patient as they consider that their child is retard.
The other main fear that the parents with disability are like to misunderstand is with the intensity and severity of the disease or abnormality that could either be treated or cured. However, there are constant growing ethical issues related to the development of the patients. In clinical practices “Decision to forego therapy are part of everyday life in the neonatal intensive care unit; with rare expectations, these choices have been made by parents and physicians without review by courts or any other body” (The Atlanic, 1985).
In such conditions, the support of parents is necessary as well their counseling that should be effectively done while conducting prenatal screening. In most of the cases, the parents feel themselves as powerless and handicapped without any knowledge regarding civil rights groups. It is evident from different cases that the care of the child is withheld in the nursery as the doctors need to take approvals from the court regarding the treatment of the patient. It has increases the moral and ethical dilemma in the special care nursery. It appears as if the individuals knowing the disability believe to let the life to die rather than making any effort to save the life of the child.
It is an accepted practice by number of American physicians that they were instructed to withhold the treatment of the babies until they die. In contemporary society, there different views and justification that are shared in which such practices are named as avoiding burden of the future life and complicity in death (The Atlanic, 1985).
There is greater extend of misinterpretation and too much self-assumption that does not any link with the well-being and healthier development of the child which remains undercover for the parents. Hence, in the clinical practices prenatal screening and diagnoses are often misinterpreted due to which they are often treated wrongly. In the social pressure the parents make the wrong decisions regarding their birth child or pregnancies.
There are different arguments that have raised question to prenatal testing and screening that remain unclear. As well as social pressure and system is a dominant factor that has discouraged parents to continue with the pregnancies that have diagnosed with disabilities. In this concern counseling and advising of the parents is very necessary.
The ethical framework for the prenatal screening and diagnoses needs effective support and counseling so that they can make the right decision. However, the contemporary legal framework is not supportive of the conduct of the healthcare professionals because of inaccuracy and lack of transparency in sharing information regarding the upcoming child. There is a need to align the medical practice to improve ethical conducts for prenatal testing and screening that should be well explained to patients.
References
Bauer, P. E. (2011). Reaching Across the Disability Divide: The Case for Collaboration with the diability community to construct a robust informed consent process around prenatal screening and diagnose. American Journal of Medical Genetics, 155(8), 1788-1790.
Qiao, X. (2015). Evaluation of the Impact Program, a Disability Immersion Experience, in Genetic Counseling Education. New York: Sarah Lawrence.
Stubblefield, A. (2007). “Beyond the Pale”: Tainted Whiteness, Cognitive Disability, and Eugenic Sterilization. Hypatia, 22 (2), 162-181.
The Atlanic. (1985). The awful privacy of Baby Doe: should infants born with treatable or manageable handicaps be allowed to die? One civil libertarain says no. The Atlantic, 255(1), 1-19.
Thomas, G. (2015). Case of Down Syndrome. Science, Medicine and Anthropology, 1-16.
