Sample Paper on Development of Genome-Based Treatments for Curing Diseases

Ethical Issues That May Surround the Use of Information Technology in the Implementation or Development of Genome-Based Treatments for Curing Diseases

Human genome has advanced and the information from it has started influencing the disciplines of biological and social sciences in significant ways. Identification of approximately 2,500 genes is anticipated to highly benefit the diagnosis and treatment of illness in the future. Nevertheless, genetic technologies have also led to several ethical issues, which can affect the human societies. Use of genetic technologies in genome-based treatments has developed a great possibility for people to influence and alter human lives.

In genetic testing, ethical issues have emanated from the expanding direct-to-consumer (DTC) genetic tests that are provided to consumers by organizations and laboratories through the internet or other media without involving health providers. Through this process, consumers are not protected from the harmful effects that may develop from false or unnecessary information due to the absence of genetic counselors and specialists (Cordeiro, 2014).

The matter of genetic testing in children raises ethical issues, particularly the Newborn Genetic Screening Programs (NGSP). Concerning informed consent, the position of parents as well as legal agents is not often clear. Parental consent appears essential since parents are capable of defending children’s interests. However, the majority of tested illnesses are occasional and any wrong positive result can lead to excessive stress. The advantages of testing are more significant than individual damages and bureaucratic processes put large burdens on health systems (Cordeiro, 2014).

Gene therapy can be performed in various ways and create several forms of genetic alterations. Germ line genetic changes entail genetic modifications that can be transferred to the descendants while somatic genetic changes involves genetic variations, which are limited to the person and are not transferred to offspring. Germ line gene therapy is forbidden in several nations for ethical reasons and warrants the scrutiny of international biolaw and bioethics documents. Conversely, the restrictions of somatic gene therapy have raised a debate, and they are contentious because of safety reasons. The limitations were established when a person died in the course of gene therapy experiment. Because of safety and efficacy challenges, gene therapy tests have moved from “single-gene” illnesses to conditions, such as cancer whereby vector applications are confined and temporary. The issue lies on how to approximate risks and benefits accurately. Thus, a thorough informed consent procedure is essential to ensure that the dangers and possible benefits are illustrated appropriately and understood (Ardekani, 2009).

The first sanctioned gene modification process was conducted in 1990 when National Institute of Health (NIH) scientists hereditarily altered white blood cells in a patient with adenosine deaminase deficiency (ADA) (Gannett, 2008). More than 1000 clinical trials have been performed since then. Issues have emerged on the possibility of some individual not being able to benefit from genetic technologies. Besides, the utilization of such technologies may also aggravate the current patterns of social and economic inequality. Genetic discrimination in the society can result in the development of a “genetic underclass.” Likewise, if only affluent groups have higher access to prenatal genetic testing, a high relative occurrence of illnesses, such as sickle cell anemia may occur among the disadvantaged groups (Gannett, 2008).

Ethical arguments over genetic confidentiality have been strongly associated with fears of genetic bias by insurance firms and employers who are allowed to access genetic data from examinations and research. Even though patient privacy and genetic confidentiality are safeguarded within the doctor-patient relationship policy, this safety is jeopardized by the current information technologies as well as the expenditure reduction stipulations of managed care. The employers can access employees’ health details with reduced legal shield against the disclosure of such data. An individual who undergoes genetic testing may be compelled to disclose the information when seeking insurance services. Insurance firms discriminate against candidates for health, mortgage, life, and disability plans when genetic testing shows the possibility of developing an illness or disability. The bias occurs in terms of denying people coverage because the genetic vulnerability is considered a “preexisting condition.” The firms may impose high premiums for policies, reduce benefits, or omit some conditions. The approach implemented in the U.S. to refute genetic prejudice entail the treatment of genetic data as integrally private and dissimilar to other medical data (Gannett, 2008).

Arguments have developed regarding whether health professionals are sufficiently trained about genetics and genetic technologies, as well as the effects of their use. Vital concerns include personal and family counseling and testing, informed consent for a person interested in genetic testing, and the utilization of the genetic test for reproductive risk valuation and taking reproductive decisions. The majority of people and health professionals do not understand genetics, genetic technologies, and the impact of having genetic data.

Prenatal diagnosis entails methodical and universal selection of fetuses on genetic basis. Prenatal genetic testing has led to significant ethical queries concerning reproductive rights as well as eugenics. The reproductive rights entail more than the right of not having a child (utilization of contraception and termination of the fetus) or the right of bearing a child (negating population control policies) (Gannett, 2008). Reproductive rights also include the right to technological help to reproduce and have a specific type of child. Ethical questions have been raised about what “responsible” reproductive decision-making entails in the setting of genetic testing as well as discriminatory implantation. Parents are required to protect children from being born with illnesses that can result in critical pain and suffering. In addition, responsible parenting encompasses the willingness to have a child without conditions of having only a particular kind of child (Gannett, 2008).

It is important for the public to comprehend the significance of genetic data, and the health professionals need to have the knowledge, abilities, and resources to incorporate this new knowledge and technologies in diagnosing, preventing, and treating illnesses. Measures should also be developed to end discrimination of individuals who undergo genetic test since this process is significant in diagnosing and treating different diseases.




Ardekani, A. M. (2009). Genetic Technologies and Ethics. Journal of medical ethics and history of medicine2.

Cordeiro, J. V. (2014). Ethical and legal challenges of personalized medicine: Paradigmatic examples of research, prevention, diagnosis and treatment. Revista Portuguesa de Saúde Pública32(2), 164-180.

Gannett, L. (2008). The human genome project. Retrieved from: