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Genetic testing is commonly being viewed as a technology which helps individual in decision-making and promoting individual welfare. The discussions about ethics are especially important in health care aspect especially concerning genetic testing.
There are a few aspects of genetic testing that could lead to ethical dilemmas. One of the ethical dilemmas is the duty to disclose. Studies shown that woman who have attended genetic clinic for ovarian or breast cancer perceived themselves as having the responsibilities to provide their family with genetic information and to protect them from the harm that might be caused by the information. The findings by Hallowell that some woman perceived disclosure of genetic information as ethical dilemma suggests that there was a lack of awareness. The research suggests that people who undergo genetic testing need to aware of their role in disclosing the information with their family. They need more information and advice about which of their family member might be in risk of that certain inherited diseases or mutation. They also needed advice on the ways of disclosing the information (Hallowell et al., 2003).
The disclosing APOE genotype status to first-degree relatives of Alzheimer’s disease patients and persons with mild cognitive impairment contend with numerous ethical issues regarding the ways of disclosing potentially threatening genetic information to a vulnerable population. Therefore, the research ethics community have suggested a justice-related responsibility of clinical researchers from developed countries to provide ancillary care when conducting clinical trials in under resourced areas (Scott Roberts and Uhlmann 2013).
Genetic testing also has ethical implications for reproductive decisions. The new technology that allow genetic testing of a fetus within the first trimester of pregnancy raises ethical concerns. The testing is performed by by isolating cell-free fetal DNA in the mother’s blood. The disclosure of genetic information will put pregnant patients into ethical dilemma as their fetus cannot be born as healthy child. This genetic test put patients into a decision-making stage where they have a choice of legal abortion (Dickens 2014). According to the journal named “Genetics in Medicine”, predictive genetic testing has psychosocial benefits like reduction of uncertainty, psychological adjustment, making realistic life plans, sharing the information with family members and so on. However, there are psychological harms too, this includes alteration of self-image and expectation by others, distortion of parental perception of the child, increased anxiety and guilt, familial stress and the detection of misattributed parentage. Predictive genetic testing causes the parents to avoid the birth of a child with genetic disease or getting well prepared for it. In a nutshell, the authors suggest that plans whether to provide genetic testing and screening should be driven by the best interest of the child (Ross, Saal, David and Anderson 2013).
Research on genetic markers for mental health risk which involving children presents challenges to determine when it is ethically appropriate to share the child’s genetic information with guardians. In many cases, guardians have the authority to decide whether they want to be informed about their child’s genetic risk and whether they want their child to be informed. Informing parents about their child’s genetic vulnerability to behavioral or mental health disorders discovered during research participation can be ethically appropriate when interventions exist that can cure such vulnerability. However, the same decision may not be ethically justified when guardians are given information about their child’s genetic risk for psychopathology that is only probabilistic and available treatments will not affect the development of the disease on the child (Fisher and Harrington 2013).
Another ethical issue of genetic testing is that it is associated with a risk of depression under stress. In the absence of clear intervention and unresolved ethical concerns like the impact on the relationship between parents and children and the child’s developing sense of self, some recommendations are against testing children for psychiatric conditions. Therefore, if test is to be offered more widely, the adverse outcomes have to be monitored and minimised carefully (Newson 2009). . Being informed of one own genetic risk for a disorder can cause significant impact on the quality of life and it may promote stress. Thus the individual will be at a very high risk for negative medical outcomes. Although not all peoples undergo genetic testing suffer from these effects, many individuals may face those significant negative outcomes if they fail to seek psychological treatment (Richmond-Rakerd 2013).
Genetic testing causes ethical dilemmas in the aspect of personal privacy and privileges. In the journal of Ethical Issues in Predictive Genetic Testing: a Public Health Perspective, the author shows findings that Americans are scared that the development of genetic tests and establish of mandatory testing will reduce individual rights to privacy. This had led to discrimination. Insurance companies uses genetic testing to either reduces benefits, refuse healthcare coverage or increase premiums. Employers could repudiate employment to individuals which who were likely to need expensive health insurance and sick time benefits or who at risk of becoming debilitated (Fulda and Lykens 2006). Many people are concern with the indiscriminate use of genetic information, especially on employment and insurance discrimination. Genetic information might be used to limit insurance coverage (Lea D. H. 2003).
In the context of human immunodeficiency virus (HIV), clinicians were concerned about their obligation to warn sexual partners of HIV-infected patients about their potential risk from sexual exposure to the virus, even this may considered as breaching confidentiality (Minkoff and Ecker 2008). Notification of partners of individuals with sexually transmitted diseases (STD) is recognised as community's right to be protected from hazard and the responsibility to execute that right is on the physician. There is an obligation of physician to provide that individual with precautions to avoid a potentially lethal disease (Minkoff and Ecker 2008).
The ethics literature on genetic testing is wide and extensive. From these few researches conducted, it could be seen that the ethical dilemmas of genetic testing could be summarised in a few aspects, which are the duty to disclose, reproductive decisions, risks of depression under stress, personal privacy and the sharing of information with others. All parties should have ethical and social responsibilities in making any decisions as it might end up in either good or bad consequences.
- Dickens B.N., 2014. Ethical and legal aspects of noninvasive prenatal genetic diagnosis. International Journal of Gynecology and Obstetrics, [E-journal] 124, 181-184. Available through http://www.ncbi.nlm.nih.gov/pubmed/24299974 [Accessed 18 November 2014].
- Fisher, C. B. and Harrington, E. L., 2013. Ethics in Prevention Science Involving Genetic Testing. Prevention Science, [E-journal]14:310-318. Available at: https://libezp.utar.edu.my/login?url=http://eds.b.ebscohost.com/eds/pdfviewer/pdfviewer?sid=49a5b4ae-7799-420b-9a48-3169ec097742@sessionmgr110&vid=1&hid=111 [Accessed 16 November 2014].
- Fulda, K. G. and Lykens, K., 2006, Ethical issues in predictive genetic testing: a public health perspective. Journal of Medical Ethics, [E-journal]32(3), 143-147. Available through: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564466/ [Accessed 18 November 2014].
- Hallowell N, Foster C, Eeles R, Ardern Jones A, Murday V, Watson M., 2003. Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. J Med Ethics, [E-journal] 29, 74-83. Available through: http://jme.bmj.com/content/29/2/74.full [Accessed 18 November 2014].
- Lea, D. H., 2003, Genetic and Genomic Healthcare: Ethical Issues of Importance to Nurses. The Online Journal of Issues in Nursing, [E-journal]13, 1, 4. Available through: http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/vol132008/No1Jan08/GeneticandGenomicHealthcare.html#Lea [Accessed 18 November 2014].
- Minkoff, H. and Ecker, J., 2008. Genetic testing and breach of patient confidentiality: law, ethics, and pragmatics. American Journal of Obstetrics and Gynecology, [E-journal] 198(5), pp. 1-498. Available through http://www.sciencedirect.com.libezp.utar.edu.my/science/article/pii/S0002937807011076 [Accessed 14 November 2014] .
- Newson, A. J., 2009. Depression under Stress: Ethical Issues in Genetic Testing. The British Journal of Psychiatry, [E-journal] 195, pp. 189-190. Available through: http://bjp.rcpsych.org/content/195/3/189.long [Accessed 19 November 2014].
- Richmond-Rakerd, L. S., 2013. Modern Advances in Genetic Testing: Ethical Challenges and Training Implications for Current and Future Psychologists. Ethics and Behaviour, [E-journal] 23(1)31-43. Available through: http://eds.b.ebscohost.com.libezp.utar.edu.my/eds/pdfviewer/pdfviewer?sid=fc8404de-d46c-4c1e-957c-0d131d6172d1@sessionmgr114&vid=1&hid=111 [Accessed 16 November 2014].
- Ross, L. F., Saal, H. M., David, K. L. and Anderson, R.R., 2013. Technical Report: Ethical and Policy Issues in Genetic Testing and Screening of Children. Genetics in Medicine, [E-journal] 15(3), pp. 234-245. Available through: http://www.nature.com/gim/journal/v15/n3/full/gim2012176a.html [Accessed 19 November 2014].
- Scott Roberts, J. and Uhlmann, R., 2013. Genetic susceptibility testing for neurodegenerative diseases: Ethical and practice issues. Progress in Neurobiology, [E-journal] 110, pp. 89-101. Available through http://www.sciencedirect.com.libezp.utar.edu.my/science/article/pii/S0301008213000282. [Accessed 14 November 2014]