What are the Bioethics of Genetic Testing?

Abstract The role of society in bioethics centers around genetic technology, which has led to the emergence of ambiguous challenges within the two extremes of genetic disease: unethical usage and a dependence for medical aid. Genetic testing is revolutionary as it influences the medical care an individual receives by predicting future diagnoses. For example, genetic testing can diagnose genetic conditions and diseases including cystic fibrosis. Furthermore, testing can determine risks for disease, which is especially valuable for pregnancies. Although it seems as if genetic testing only has beneficial impacts, it is hindered by bioethics over questions of how it could affect research and the treatment of patients. Both positive and negative impacts abide by different research purposes, all with similar vulnerabilities and theories, specifically within medical fields such as oncology, gynecology, and obstetrics. Additionally, opinions may be influenced by negative psychological factors such as generational trauma and dependency. Even though society divides bioethics between minor and significant conundrums, such as empirical issues within science and medical discovery, genetic testing will remain a dependent variable on different fields of medical research.

Keywords Genetic technology, genetic disease, cystic fibrosis, oncology, gynecology, obstetrics, generational trauma

How does genetic testing for disease affect our society? Genetic testing checks for mutations in genes, chromosomes, or proteins. Data collected from a genetic test, which confirms or rules out a suspected genetic disorder, can be used to evaluate an individual’s chance of developing or passing on a hereditary illness. For genetic testing, a sample of blood, hair, skin, amniotic fluid (the fluid encasing a fetus during pregnancy), or other tissue is utilized. Additionally, a little brush or cotton swab is used to collect a sample of cells from the inner surface of the cheek during a procedure called a buccal smear. Professionals in a lab analyze the sample for modifications in its genomic makeup. The laboratory sends a patient’s doctor or genetic counselor a written report of the test results, or, if the patient desires it, the patient directly. More than 77,000 genetic tests are now in use, with many more being developed.

Bioethics has been responsible for constructing guidelines for responsible use of genetic technologies, primarily surrounding the protection of individuals involved in genetic counseling, research, and testing. For instance, doctors and researchers might treat patients and research participants paternalistically to follow the highest ethical standards, which would harm genetic and biological testing and research for the supposed benefit of patients [1]. Most available tests identify untreatable genetic diseases, such as Huntington’s disease, although geneticists have identified numerous gene mutations associated with other diseases and have consequently developed suitable genetic tests. Due to these factors, many individuals have been satisfied with the variety of options available for testing. This strikes a more positive vision of the future of genetic testing for families with rough histories of disease.

While bioethical concerns about genetic testing have been extensively discussed, they are now more urgent due to the field’s rapid advancements following the accomplishment of the Human Genome Project. The goal of this 13-year, multibillion-dollar program was to determine all existing genes and make them accessible for further research. However, the initiative raised several ethical issues, and Congress recognized the need to create programs to address ethical, legal, and societal issues when crafting the legislation that authorized the federally funded Human Genome Project. Therefore, based on the research of the ACOG, “the ethical obligations of clinicians start with the need to maintain competence in the face of this evolving science” [2]. Clinicians and physicians may vary recommendations depending on the patient’s background and/or reason for testing.

Reactions to genetic testing are also of grave concern. Individuals’ reactions usually depend on their results. When those at risk for disease obtained negative test results, catastrophic reactions, including suicide, were predicted but were not realized. Indeed, the psychological discomfort experienced by those who received positive test results has often decreased as the uncertainty surrounding their genetic status has diminished. According to Marteau, T. M., & Croyle, R. T., the manner in which genetic information “is given varies widely—as relative and absolute risks, probabilities and percentages, and numerous verbal descriptors” [3]. Unexpectedly, some persons who receive negative test results struggle to accept their updated risk status. Based on the aforementioned research, the outcome of predictive DNA testing for breast cancer among women appears to have minimal bearing on anxiety levels in general. This has concerned researchers due to the lack of awareness of a patient’s psychological response to the results of genetic testing, creating a more negative image of genetic testing in the social eye.

Advocating for genetic testing has generated mass amounts of data aiding how genetics are relevant to human lives. Throughout the years, this field has advanced, and much research has been conducted into reactions in different societies. Additionally, researchers have identified how paternalism has changed and how it factors into bioethical considerations in genetic sciences. Psychological research into genetic testing has also suggested new, irrational biases against the procedure. These factors show how the future of genetic testing will continue to depend on several medical research sectors, notwithstanding society’s division of bioethics into minor and significant conundrums.

References

1. Simmons, D. (2008). Bioethics in Genetics. Nature news. Retrieved November 14, 2022, from https://www.nature.com/scitable/topicpage/bioethics-in-genetics-42093/

2. American College of Obstetricians and Gynecologists. (2008, June). Ethical issues in genetic testing. ACOG. Retrieved November 14, 2022, from https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2008/06/ethical-issues-in-genetic-testing

3. Marteau, T. M., & Croyle, R. T. (1998, February 28). The new genetics. psychological responses to genetic testing. BMJ (Clinical research ed.). Retrieved November 15, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1112686/