16 May 2022

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Ethical Issues Involving Parental Genetic Testing

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Due to the growth in genetic testing as well as the anxiety of discernment by the society due to genetic test results, the fields of public health, ethics, alongside genetics have united. Whether somebody's relative to positive conceivable genetic test must be informed of the outcomes and associated dangers is a topic essential for discussion. The discussion must incorporate the ethical and moral responsibilities of the physician making diagnosis alongside the patient. The choice to inform or not to notify will differ based on what ethical principle is applied. Application of libertarian or utilitarian principles produces varied results. Also, the principles of non-maleficence and justice will play an important role (Fulda & Lykens, 2006). 

Due to the purpose of carrying out carrier testing, to determine if parents are carriers of undesirable mutations that they are likely to pass on to their children, carrier testing touches on important reproduction decisions. Thus, advice on the outcomes of carrier tests needs to be communicated to couple’s or individuals with regard to their beliefs concerning the issue (Quaid, 2016). Thus, it’s the obligation of the practitioner communicating the results to provide counseling. Additionally, some mutations have a high prevalence in certain ethnic communities. This presents a problem of perceived stigmatization of such people. In the event that the individual or couple are determined as carriers of a certain mutation, the available choices which enable them to refrain from passing on the defective genes to their offspring are few. Thus, the person providing counseling is faced with the problem of communicating these choices to the individuals. 

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It is crucial that public health practitioners establish conceivable exposures and recommend testing for infectious illnesses that are reportable illnesses. In case the genetic condition becomes reportable disorders as a result of the growth of necessary screening, practitioners of public health may be confronted with problems of revelation (Lachmann, 1998). For instance, extensive immunologic genotyping would be needed to lessen the spread of universal, drug-resilient contagions. Therefore, it would be anticipated that many of the required tests would be offered within a private sector. But, the public sector maintains the accountability for privacy, and the success of genetic screening carried out under the auspices of public health (Holtzman, 1997). Thus, newborns screening can only be carried out for conditions where they stand to advance from information gained as opposed to prognostic guidance for impending pregnancies (Women's Health Care Physicians, 2008). 

Concerning predictive testing, the dilemma of the need to know one’s future versus the psychological implications of the knowledge becomes apparent. Although understanding how genetics will affect future health is vital, some individual is adversely affected by such knowledge hence the need for counseling. Since predictive testing needs to have the consent of the person, a problem arises with testing children (Quaid, 2016). Furthermore, the information from these tests may be vast such that deciding which is useful and which is not becomes a difficult task.

Diagnostic testing, on the other hand, is susceptible to false results that may either be positive or negative. False-positive results have the effect of causing anxiety and despair due to future diagnostic tests while false negative results may cause psychological anguish. Consequently, genetic empiricist argues that it is not prudent to share certain kinds of diagnostic testing information with individuals since it creates psychological torture by reducing the person to a future patient (Quaid, 2016). However, libertarians are of the opinion that individual has a right to information on current and future risks to their health. Thus, the genetic libertarians seem to have a more realistic approach to the issue than empiricists. 

The notion that genetic test varies from tests for other conditions is regarded as genetic exceptionalism. Evidence on genetics is private as well as directly associated with the person's identity (Green & Botkin, 2003). Genetic information testing can destroy the whole family and is an issue of employment, insurance cover, and healthcare. An individual can make life-changing choices from the outcomes of genetic test (Burke, 2002). Therefore, disclosing the genetic outcomes of a person can be challenging in all sorts of the person's life. When a genetic condition is identified, the patient and the family should be counseled by both physicians and professionals trained to carry out genetic counseling using a non-directive method. A non-directive method of counseling retains a person's autonomy and lets the patient make informed choices voluntarily (Brannigan & Boss, 2001). 

However, according to the utilitarians, moral choices should be made founded on calculating the ration of burden-to-benefit from the viewpoint of the society (Kahane, Everett, Earp, Farias, & Savulescu, 2015). The view advances the good of society over an individual and considers such factors as extent, purity, duration, propinquity, intensity, certainty and fecundity (Brannigan & Boss, 2001). In case there are many individuals at risk they should be informed to allow other society members to be screened and make choices that influence their families (Borry, Fryns, Schotsmans, & Dierickx, 2006). On the contrary, libertarian perspective states that individual sovereignty has the absolute ethical significance. Every individual has their right to make up-to-date choices. People are entitled to the right to liberty of speech, privacy, and freedom from harassment. Further, as stated by Nelson et al. (2014), individuals have the right to make informed choices based on sufficient information as well as counseling. Thus, it is up to the person to decide to inform the family based on their understanding of the condition (Kielstein & Sass, 2002). Besides, there exist trust between the patient and the physician. Doctors are normally anticipated to maintain the rights of a patient apart from the incidences of obligatory reporting. Therefore, breaching the trust inherent in physician-patient relations is likely to have devastating impacts. 

The principle of justice is a pre-distinguished acknowledgment of public health specialists as well as members of a family at risk (Ter Meulen, 2015). Many principles of justice back the stand that every individual has the right to get primary social goods including medical therapy. In case an individual is ignorant of their pre-disposed genetic condition, they lack the necessary information to pursue available therapy. Hehir-Kwa et al. (2015) enlighten that the physician is usually at the core of discussion about whether to enlighten members of the family of their risks. Thus, the physician is focused on protecting the patient's confidentiality and the idea of doing any harm (Shahmirzadi, Chao, Palmaer, Parra, Tang, & Gonzalez, 2014). Though, the theory of non-maleficence might be dishonored in case the physician does not enlighten the members of the family who may be at risk of the genetic condition.

References

Borry, P., Fryns, J. P., Schotsmans, P., & Dierickx, K. (2006). Carrier testing in minors: a systematic review of guidelines and position papers.  European Journal of Human Genetics 14 (2), 133.

Burke, W. (2002). Genetic testing.  New England Journal of Medicine 347 (23), 1867-1875.

Fulda, K. G., & Lykens, K. (2006). Ethical issues in predictive genetic testing: a public health perspective. Retrieved on 8 March 2018, from ttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564466/.

Genome Campus. (2014). What is genetic testing? Retrieved on 9 March 2018, from https://www.yourgenome.org/facts/what-is-genetic-testing .

Hehir-Kwa, J. Y., Claustres, M., Hastings, R. J., van Ravenswaaij-Arts, C., Christenhusz, G., Genuardi, M., ... & Cornel, M. C. (2015). Towards a European consensus for reporting incidental findings during clinical NGS testing. European Journal of Human Genetics, 23 (12), 1601-6. doi: 10.1038/ejhg.2015.

Kahane, G., Everett, J. A., Earp, B. D., Farias, M., & Savulescu, J. (2015). ‘Utilitarian’judgments in sacrificial moral dilemmas do not reflect impartial concern for the greater good.  Cognition 134 , 193-209.

Nelson, H. D., Pappas, M., Zakher, B., Mitchell, J. P., Okinaka-Hu, L., & Fu, R. (2014). Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: a systematic review to update the US Preventive Services Task Force recommendation.  Annals of internal medicine 160 (4), 255-266.

Quaid. K. A. (2016). Ethical issues in genetic testing. Indiana University Center for Bioethics . Retrieved on 9 March 2918, from https://www.genome.gov/multimedia/slides/wgt/quaid.pdf.

Shahmirzadi, L., Chao, E. C., Palmaer, E., Parra, M. C., Tang, S., & Gonzalez, K. D. F. (2014). Patient decisions for disclosure of secondary findings among the first 200 individuals undergoing clinical diagnostic exome sequencing.  Genetics in Medicine 16 (5), 395.

Ter Meulen, R. (2015). Solidarity and justice in health care. A critical analysis of their relationship.  Diameters , (43), 1-20.

Women’s Health Care Physicians. (2008). Ethical issues in genetic testing . Retrieved on 8 March 2018, from https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Ethics/Ethical-Issues-in-Genetic-Testing. 

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