Almost every nurse will come across clinical situations that pose ethical dilemma in their practice. In this paper, we look into the ethical dilemma associated with genomic and genetic issues in acute pediatric care settings. Genetic testing and gene based therapies are an integral part of pediatrics. Genetic diseases are commonly identified in the early days of life. Approximately, 53 out of 1000 children, are diagnosed with a disease that is linked to a genetic etiology. As front desk executives, nurses are more likely to participate in activities that involve genomic testing and gene based therapies. The advent of human genomics has enabled efficient identification of genetic abnormalities. Newborn screening for genetic diseases has become a routine part of pediatric practice. There are a number of ethical issues associated with this practice. Due to lack of geneticist and genetic counselors, it has become necessary for nurses have knowledge of genetic testing and the ethical dilemma associated with it. (Ross & Moon, 2000)
In pediatric medicine, parents are treated as ideal candidates for making decisions on behalf of the child. The aim of a nurse who offers genetic counselling to parents, is to provide accurate information, so that the parents can make an informed decision. The International Council of Nurses Code of Ethics for Nurses (2001) and the Code of Ethics for Nurses with Interpretative Statement (ANA, 2001) act as ethical guidelines for nurse practitioners. The code of ethics stresses the importance of taking into consideration the cultural, ethical, and racial sensitivity, while providing genetic services to the client. The primary goal of ethical conduct is to support the client’s self-determination and autonomy. (Genetics/genomics nursing, 2007)
New gene sequencing technologies help to identify mutations in the genes that can lead to diseases. These technologies can be used to screen for genetic diseases in a given population or can be used to diagnose genetic diseases through genetic testing. Identifying genetic mutation in the child, poses the risk of stigmatization and discrimination of the child based on these test results. Thus, genetic test and screening are performed taking into consideration the best interest of the child. Genetic counselling should be provided to the parents or the caretaker, before and after the test. Results of many genetic tests are ephemeral in nature, and may not hold meaning without a genetic counselling. (Genetics/genomics nursing, 2007)
One of the common ethical dilemma in pediatric genetic testing, is to decide the right time to go in for a predictive/presymptomatic genetic test. This decision of the nurses will be based on factors that affect child welfare. In certain situations, it may not be necessary for the parents to know about a genetic test result, as it is likely to cause more harm than benefit. Thus making the decision as to ‘when to know or not know’ is an important dilemma in pediatric genetic testing. In such circumstances, nurses are expected to use their knowledge and make a decision that best suits the needs of the child, family and the society. Likewise, maintaining the confidentiality of the information in the genetic test is equally important. Though presently there is a dilemma as to who owns the results of the genetic test, the nurses are expected to act in the best interest of the patient.
The approach to solving the ethical dilemma is largely based on the case and thus it is difficult to generalize a single decision to all patients unanimously. Knowing a test result, can have an emotional impact on the family. Knowing that a faulty gene of the child is inherited from the parents, can add to the sense of guilt. Likewise, if the information falls into the hand of insurance or employment officials, the child may face discrimination. Information about the genetic test results of an individual, may also affect his future opportunities. Genetic testing can also have certain controversial applications like sex selection or certain controversial research application. It is important that nurses take informed consent from all parties involved while deciding for genetic testing on such controversial lines. (Genetics/genomics nursing, 2007)
Reference
Genetics/genomics nursing. (2007). Silver Spring, Md.
Ross, L. & Moon, M. (2000). Ethical Issues in Genetic Testing of Children. Arch Pediatr Adolesc Med, 154(9), 873. http://dx.doi.org/10.1001/archpedi.154.9.873
