Neonatal opportunity to educate parents and other

Neonatal screening provides anopportunity to not only identify sickle cell disease but also the opportunityto educate parents and other caregivers about the disorder before a childstarts to develop symptoms. Educating on sickle cell disease focuses on thegenetics, the basic pathophysiology, and the importance of regularly scheduledhealth maintenance visits. Parents and caregivers need to be educated on suchmatters because they are the child’s first line of help, with doctors and othermedical professionals being next in line. Parents and caregivers can be taughthow to manage pain crises by understanding possible triggers for pain crises,such as dehydration and exposure to extreme temperatures. Immunizations andother medications are other health maintenance steps that can be taken toensure relief. All of this would be regarded asimpossible if it were not for genetic counseling. The purpose of geneticcounseling is to guide people through the meticulous decision-making processconcerning reproducing.

Because sickle cell disease is a genetic disease theprimary means of pathology is reproduction. Therefore, genetic counseling forcarriers of the sickle cell trait is of utmost importance because it wascreated to help solve their inheritance problems (Silva & Ramlaho, 1997). Counselingfor sickle cell disease deals with the occurrence or risk of the disease in afamily and helping to understand how genetic heritage contributes to thedisease. Genetic counseling is ideal because it guides a family on decisionsabout procreating while defending the family’s interests in mind. According tosome authors “individuals are aware of the problem without being deprived oftheir reproductive decision-making rights” (Ramalho & Silva, 1997). Genetic counseling is based on fiveethical principles. Autonomy, privacy, justice, equality, and quality allconstitute genetic counseling for not only sickle cell disease, but geneticcounseling for all other genetic diseases. The principle of autonomy declaresthat genetic testing should be voluntary.

The principle of privacy says thatthe findings of genetic testing cannot be exchanged to any person withoutexpress consent. The principle of justice supports the protection for therights of susceptible individuals. The principle of equality provides equalaccess to tests. And lastly, the principle of quality requires that all tests thatare administered are carried out in labs are done with professional and ethicalsupervision.

 

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