Ethical Considerations of Gene Therapy

Categories: Moral


Parents are now able to test their children for diseases and life threatening conditions through genetic testing. According to Vaughn, gene intervention is defined as, "...the manipulation of someone's genetic material to prevent or treat a disease" (2014, p.547). The technology, preimplantation genetic diagnosis (PGD) is used to check the sex of the baby and other genetic information regarding the child (Kincaid, 2015). Modifications can be applied through genetic interventions arise in ethical dilemmas, because it is not the same. Gene therapy was first approved in 1990 to a four year old girl who had a genetic disease that left her defenseless from infections (Gene Therapy).

Without gene intervention, parents will continue to worry about passing down a disease they have, and some will decide to not have kids. Modifications can also be done through gene therapy by modifying normal cells. Germline cells are the ones affected, which can also be inherited through generations. This is not the same as deliberating a disease, which is done through somatic cells, and are not inherited.

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This issue erupts into ethical dilemmas that people hold many different perspectives to. Ethical principles such as autonomy, non maleficence, beneficence, and morality, are checked over while reviewing gene therapy.

Ethical Principles and Concepts Explained

Morals are what we observe to be right or wrong and is also taught in all religions. Religion includes doing good and helping us realize what we should and shouldn't do. Autonomy allows patients the right to their own decisions whether the healthcare provider agrees with the decision or not.

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Non-maleficence supports the idea that there should be no unnecessary harm done, and according to Vaughn, 2014, nonmaleficence is defined as, making sure we do not intentionally or unintentionally harm someone (Vaughn, 2014). Since germline editing is not proven safe yet, some can argue physicians are not following the principle of nonmaleficence. Beneficence is also intended to prevent harm and do good to others. Gene intervention also interferes with this principle. According to What are the Ethical Concerns, 2017, ... until germline genome editing is deemed safe through research, it should not be used for clinical reproductive purposes; the risk cannot be justified by the potential benefit." Ethical principles listed above are important to judge behavior fairly and protect patient rights.

Ethical Dilemmas Brought by Gene Interventions

There needs to be limits placed in healthcare facilities. Patient confidentiality is very important. Patient information must not be shared with anyone who is unauthorized. During gene intervention, informed consent is crucial. Physicians must inform the patient of all information before actions are taken. Family linked genetic information is also a serious ethical dilemma. The price of the intervention is also an issue for couples who can't afford it. Ethical dilemmas arise when germ line cells are altered. According to Takashima et al., the family linked genetic information has always posed serious ethical dilemmas to clinicians and physicians regarding that such information are still expected to be private and confidential (Takashima et al., 2018).

According to What are the Ethical Concerns, 2017, "Some people worry that it is impossible to obtain informed consent for germline therapy because the patients affected by the edits are the embryo and future generations." Another concern for gene interventions is that it will only be accessible to the wealthy, and will add on to other healthcare issues that already exist. According to (Kolata, 2014), "Many insurers only cover part of the process such as the genetic analysis and not the in vitro fertilization required to obtain the embryos for testing".

Lastly, gene editing has not been proven to be safe by research, which interferes with principles physicians have. According to the AMA, physicians must safeguard patient confidentiality and privacy (AMA Principles, 2017). Ethical dilemmas arise during gene intervention that must be addressed. This supports the overall claim that gene intervention should not be used for personal use.

Gene intervention used to deliberate diseases

Physicians are able to find gene mutations that can cause a disease, found during gene testing. Gene therapy is done on somatic cells, which are single body cells and are not inherited through generations. According to Kincaid, 2015, "...doctors can perform PGD by taking one cell from each embryo and analyzing the DNA for disease-causing mutations." Physicians are treating illnesses every day, and it is a significant part of their job. They are able to keep up with patient's medical records and aim to prevent diseases. "Preventing disease is a standard goal of medicine, but a new technology takes it farther than we normally do by preventing a potential person with a genetic disease from being born at all" (Kincaid, 2015). The new invention is a great tool for physicians to conduct more research on, and use to deliberate illnesses.

Couples test their Child's embryo during pregnancy for gene mutations, and many mutations are caught right away. According to Kolata, "the Reproductive Genetics Institute, has tested embryos from more than 2,500 couples and sought to identify 425 gene mutations" (Kolata, 2014). Couples aim to raise healthy children and always want to be aware of any gene mutations or diseases that can be genetically passed to the next generation. Having technology like PGD, that will prevent a child from an illness, will help couples start families who chose to not have kids due to a genetic illness. This paragraph will support the main argument by explaining the use of gene intervention for health reasons only.

Gene intervention used for enhancement purposes

Modifying genes for personal preferences is unacceptable and raises concerns of going against human dignity. According to Beriain, 2018,"The Universal Declaration on the Human Genome and Human Rights adopted... , "The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity." Human genome and human dignity are linked together and unite families together.

If enhancement is used, Germ line cells are the cells that are altered, and can also be inherited through generations. According to Vaughn, 2014, germ- Line cells are the second type of gene therapy, and they modify genes, which are also inheritable. With gene intervention on gremlin cells, parents are able to modify their children's genes, which is only legal in some states.

Controlling Gene Therapy

The best way to control gene therapy is to use legal efforts and understanding morals. Moral efforts are needed to help judge between right or wrong. Morals do not have consequences, which is why laws are needed. People base their morals on tradition, religion, and culture. According to Vaughn, "...morality and the law overlap. Often what also is immortal turn out to be illegal." For example, stealing is banned by law and in religion. There needs to be laws to restrict gene therapy, and it should only be allowed for health related reasons.

Gene therapy is a great alternative for parents who have a gene inherited disease that want to start a family. Parents may look at other alternatives such as abortion or surrogacy to prevent their child from health issues. Gene therapy is a great for saving many children from having illnesses and should not be allowed for any other purpose.

Counter Argument

Some argue that gene interventions can improve the human species and should be legal everywhere. According to Lagay, enhancement is defined as, " alteration to improve upon normal organization, appearance, health, and functioning." Gene intervention done for enhancement use, allows for normals cells to be improved and some authors believe this may improve humans overall. Authors claim that germline editing should be considered a moral imperative to improve the human species (Beriain, 2018).

Although a cell is normal, enhancing it will make it prone to errors. If an error occurs, it will not only affect the child, but generations to come. Enhancement is different than preventing a disease, because fixing a mutation will cause the cell to be close to normal, not above normal. Although people argue enhancement of genes is moral and legal, it is still unsafe and can cause harm to humans if errors occur.


Gene therapy should only be used for health reasons, such as weakening or deliberating a disease. Enhancement done during gene therapy causes ethical dilemmas and, if it is done wrong, errors may be detrimental. It should not be up to parents to choose alterations their child has because technology has advanced. Ethical considerations and safety must be looked into before being approved.

Research still does not prove the safety of gene intervention. If it is used for enhancement reasons, which targets germ line cells, it can harm future family members. Franklin Collins gives his perspective on gene intervention and states, "But the individual whose lives are potentially affected by Germline manipulation could extend many generations into the future.They can't give consent to having their genomes altered from what nature would have made possible." (Skerrett, P., Newman, S., Dale, & Maryamu, 2018). As technology advances, so does gene therapy and there must be limits on how it's used. It is important to learn about gene therapy and the risks and benefits of it because harm may occur if there is an error to the germ line cells. Research has still not proven the safety of gene intervention for enhancement use, and it is not worth risking a child's health or family members for personal preference.


AMA Principles of Medical Ethics. (2017, October 24). Retrieved from
Beriain, M. (2018, September 21). Human dignity and gene editing. Retrieved from
Bohlin, R. (1970, January 1). Genetic Intervention: Ethical Challenges Ahead. Retrieved from
What are the Ethical Concerns of Genome Editing? (2017, August 03). Retrieved from
Is gene therapy safe? - Genetics Home Reference - NIH. (2019, October 1). Retrieved from
Kincaid, E. (2015, July 14). Genetic testing is taking medicine to an all-new extreme. Retrieved from
Kolata, G. (2014, February 03). Ethics Questions Arise as Genetic Testing of Embryos Increases. Retrieved from
Lagay, F. (2001, February 1). Gene Therapy or Genetic Enhancement: Does It Make a Difference? Retrieved from
National Academies of Sciences, Engineering, and Medicine. 2017. Human Genome Editing: Science, Ethics, and Governance. Washington, DC: The National Academies Press. (pp. 138-150).
Skerrett, P., Newman, S., Dale, & Maryamu, U. (2018, February 12). Gene editing the human germline: What are the risks? Retrieved from
Stanford, C. C., & Connor, V. J. (2018). Applied law and ethics for health professionals. Burlington, MA: Jones & Bartlett Learning.
Takashima, K., Maru, Y., Mori, S., Noda, T., & Muto, K. (2018). Ethical concerns on sharing genomic data including patients' family members. BMC medical ethics, 19(1), 65.
Vaughn, L. (2016). Bioethics: Principles, Issues, and Cases (3rd ed.). ISBN-10: 0190250100, ISBN-13: 9780190250102. Oxford University Press

Updated: Nov 01, 2022
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Ethical Considerations of Gene Therapy essay
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