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Gene testing or DNA-based tests are techniques used to test genetic disorders. Genetic tests are used for various reasons, like prenatal diagnostic testing, newborn screening, carrier screening for disease prevention, presymptomatic testing for predicting and estimating the risk of adult-onset disorders and identity testing used in forensics.
The advances in the techniques used for genetic testing have improved a lot of lives. With the advent of this knowledge, doctors are properly guided toward appropriate treatment plans. The technology has also allowed families to avoid devastating diseases in future generations. However, the myriad of possible uses of genetic testing have not gained popularity without some ethical issues. This has led the public to be concerned with this powerful technology.
The ethical issues in genetic testing involve the following: accuracy of testing, privacy and confidentiality, uncertainties surrounding the decision-making, reproductive issues, discrimination, and psychological impact and social stigmatization. With these concerns, many feel that the risks may outweigh the benefits of these tests.
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Accuracy of Testing
The accuracy of the genetic test procedures is one of the subjects of debate in the scientific community. All medical testing has the possibility for laboratory errors. The errors can be due to chemical contamination, sample misidentification, and human errors.
The possibility of having inaccurate results with genetic tests can lead to serious consequences. Consequently, genetic tests are considered services by the FDA. Thus, no regulations are provided for evaluating the accuracy and reliability of gene testing procedures. The lack of oversight from the government is the reason for the concern over the accuracy of the results of these tests.
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Privacy and Confidentiality
Another major ethical issue is privacy and confidentiality. One of the most controversial examples is the DNA data banking by different governments all over the world. This move to collect and store DNA information in databases for the purpose of criminal justice allows the use of private profiles without the knowledge and consent of the individual. This can be considered as infringement of privacy and confidentiality.
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Uncertainties with Gene Tests
Conducting gene testing can be a difficult decision, especially with susceptibilities and complex conditions like heart disease. This is because these diseases could be linked to multiple genes or can be influenced by other factors such as gene-environment interactions.
The issue of uncertainty also arises when there is no available treatment for a particular disease. In this case, one can argue that gene testing may not be necessary. Meanwhile, parents face the ethical issue of whether they have the right to decide for their minor children regarding the conduct of these tests for adult-onset diseases.
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As far as reproductive issues are concerned, healthcare personnel should properly counsel parents regarding the decision with the use of genetic technology. Parents should be properly informed with the risks and limitations, especially with complex and controversial procedures.
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One of the best examples of ethical issues on the workplace brought about by genetic testing is the issue of genetic screening before hiring a person. Elimination based on the results of genetic screening is a form of discrimination.
Another concern related to discrimination due to gene testing is prevalent with the US insurance system. This has even led to the enactment of the Genetic Information Nondiscrimination Act or GINA in 2008. This law prohibits the discrimination of insurance companies and employers on the basis of information derived from gene testing.
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Psychological Impact and Stigmatization
Upon the discovery of an individual's genetic differences due to testing, the chances of provoking anxiety due to the society’s negative perception of him or her are high. This ethical issue does not only affect an individual with genetic differences. This issue is also evident with minority communities and their struggle to fight discrimination in employment, education, criminal justice, and other aspects of the society.
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With all the ethical issues related to gene testing, the government, together with the help of the medical community, academe, and the private sector, should formulate plans to address these concerns. The enactment of GINA is a great start to answer these key issues. Nevertheless, it should be a continuous crusade to instill to the general public that the use of this powerful technology must be coupled with responsibility.