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Modern genetic screening technology allows ascertaining the presence of anomalies before a child is born, but it also raises inevitable ethical concerns. Not only is the reveal of a potential anomaly a significant emotional challenge for parents, but it might also necessitate interventions that contradict moral principles. When genetic testing shows anomalies, it is essential for healthcare professionals to show compassion and provide evidence-based recommendations regarding the health of the fetus to the parents.
The first ethical issue is the protection of the parents’ confidentiality. Genetic testing is a sensitive procedure, which reveals information, regarding the health of the parents as well as the fetus. As medical data regarding abnormalities is essential for subsequent research, it is inevitable that some degree of parental confidentiality will be violated. Meanwhile, there is demand for such data, as according to Richardson and Ormond (2018), “clinical validation studies on the detection rate and PPV for CNVs and single gene disorders have largely not been completed” (p. 3). The most appropriate way to address this issue is to ensure parents that only authorized professionals will have access to the data, which is crucial in developing solutions to future similar issues.
The second ethical issue is informed consent regarding any subsequent interventions. As pregnancy is a complex process with many risks for the fetus and the mother, it is essential that parents are fully informed of all potential health outcomes. Furthermore, it is also important for healthcare professionals to consider the possibility of uncertain meanings derived from diagnostic tools. Prenatal testing is also not immune to diagnostic uncertainty, as there are numerous ways the equipment can deliver inaccurate results – karyotype analysis, in particular, has been known to yield a large number of inconclusive results (Richardson & Ormond, 2018). Therefore, parents should receive the sufficient knowledge and information, before they make any further decisions.
The third ethical issue is the decision to terminate pregnancy that can be made by parents or recommended by doctors. The reason why parents might opt for adoption lies in their unwillingness to raise a child with genetic deviations (Di Stefano et al., 2020). Meanwhile, it is also possible that termination of pregnancy is recommended, but it can contradict the religious and moral views of the parents. In either case, it is a sensitive issue, which might raise objections and compromise moral integrity of the parents. Effective communication requires consideration of religious and social background of parents.
Handling such circumstances requires healthcare professionals to be objective and compassionate. First, it is important to show empathy and acknowledge the difficult choice that parents have to make (Ewnetu et al., 2021). Second, it is vital to provide a comprehensive explanation of risks and consequences that either decision will have. A study of sixteen parents by Hammond et al. (2021) has revealed that parents are more likely to make reasonable decisions, when healthcare professionals show compassion and provide gradual exposure to potentially shocking information. Third, parents should know that all tests have a degree of uncertainty, before they decide to make an irreversible decision regarding the fetus. Respect for patients is as important as the quality of medical services, as it is the foundation of trust.
In conclusion, managing ethical issue associated with fetal screening requires from a healthcare professional a combination of emotional intelligence and professional competence. Any information regarding potential abnormalities in the fetus may make the parents anxious and agitated. Meanwhile, treatment necessities may violate moral and religious views of the patients. Showing respect, ensuring informed consent and confidentiality are all important steps in communicating with parents. Ultimately, managing fetal abnormalities is a challenging task that should only be completed with the participation of parents.
References
Di Stefano, L., Mills, C., Watkins, A., & Wilkinson, D. (2020). Ectogestation ethics: The implications of artificially extending gestation for viability, newborn resuscitation and abortion. Bioethics, 34(4), 371-384. Web.
Ewnetu, D. B., Thorsen, V. C., Solbakk, J. H., & Magelssen, M. (2021). Navigating abortion law dilemmas: experiences and attitudes among Ethiopian health care professionals. BMC Medical Ethics, 22(1), 1-7. Web.
Hammond, J., Klapwijk, J. E., Hill, M., Lou, S., Ormond, K. E., Diderich, K. E., & Lewis, C. (2021). Parental experiences of uncertainty following an abnormal fetal anomaly scan: Insights using Han’s taxonomy of uncertainty. Journal of Genetic Counseling, 30(1), 198-210. Web.
Richardson, A., & Ormond, K. E. (2018). Ethical considerations in prenatal testing: Genomic testing and medical uncertainty. Seminars in Fetal and Neonatal Medicine, 23(1), 1-6. Web.
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