A mother with a new set of female twins learns of a genetic test that can be done to determine if the children are carriers of the gene for breast cancer. She submits the sample to the company, receives the results in 2 weeks, and learns that one twin is at risk while the other is not. The mother takes this information to the infants’ pediatrician and asks for further testing on the child with the increased susceptibility and wants to know if preventative treatment can begin now. The mother also enters this information as patient-generated data which has created several red flags in the electronic record’s decision support system. The clinical staff are concerned since the patient with the risk for breast cancer is only weeks old. Answer the following questions regarding this case: Genomic and Implications Health Information Technology Essay Paper
How would you handle this situation from an ethical perspective?
How will the mother having this knowledge about the infants affect the way they will be treated developmentally, medically, socially, and economically?
Should there be restrictions on the age of individuals receiving genetic testing through companies of questionable reputation?
Genomic and Implications Health Information Technology
Handling the Situation from an Ethical Perspective
From an ethical perspective, further testing on the child should be done to ascertain her susceptibility to cancer. Ethically, parents have the autonomy to make medical decisions for their children. The beneficence ethical principle requires healthcare providers to promote good and act according to the best interests of the patient (Braverman et al., 2018). The decision to have the infant undergo further genetic testing is as per the patient’s best interests. Moreover, the mother wants to know if preventative treatment can start. Therefore, further genetic testing will promote more autonomous decision-making for the infant in the future. As the child grows, knowing that she is at risk of developing breast cancer will ensure she adheres to the appropriate preventative measures and thus will enhance her developing autonomy (Garrett et al., 2019). Genomic and Implications Health Information Technology Essay Paper
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Impact of the Knowledge
Knowing that the infant is predisposed to cancer risk will make the child to be perceived as sickly or susceptible during her childhood and during her development as well. As the child grows, the information may harm her psychological and emotional wellbeing due to the knowledge that she is predisposed to the risk of developing a terminal illness (Bin et al., 2018). Moreover, predictive genetic testing could lead to probable discrimination later by insurance firms or possible employers.
Restrictions on the Age of Individuals receiving Genetic Testing
Yes, there should be restrictions on the age of individuals receiving genetic testing through companies of questionable reputation. This is because such companies may not follow the appropriate guidelines and code of ethics for genetic testing. This may lead to detrimental effects from the testing in the future if the appropriate guidelines and ethics are not adhered to.
References
Bin, P., Conti, A., Capasso, E., Fedeli, P., Policino, F., Casella, C., Delbon, P., & Graziano, V. (2018). Genetic Testing: Ethical Aspects. Open Medicine (Warsaw, Poland), 13, 247–252. https://doi.org/10.1515/med-2018-0038.
Braverman, G., Shapiro, Z. E., & Bernstein, J. A. (2018). Ethical Issues in Contemporary Clinical Genetics. Mayo Clinic proceedings. Innovations, quality & outcomes, 2(2), 81–90. https://doi.org/10.1016/j.mayocpiqo.2018.03.005.
Garrett, J. R., Lantos, J. D., Biesecker, L. G., Childerhose, J. E., Chung, W. K., Holm, I. A., Koenig, B. A., McEwen, J. E., Wilfond, B. S., Brothers, K., & Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group (2019). Rethinking the “open future” argument against predictive genetic testing of children. Genetics in medicine: official journal of the American College of Medical Genetics, 21(10), 2190–2198. https://doi.org/10.1038/s41436-019-0483-4.
Genomic and Implications Health Information Technology Essay Paper