Is Genetic Testing Ethical? What is Genetic Testing- Prenatal and Pre-Implantation

WRITTEN BY sHRIYA SENAPATHI

Illustrated by Sydnie Lim

The ethical context around prenatal genetic testing is complicated and has moral dilemmas. Genetic testing is a medical test used to identify genetic mutations and variations in DNA, acting as a diagnostic tool for potential genetic disorders. There are multiple other types of genetic testing such as prenatal and preimplantation testing, carrier testing, panel testing, and large-scale genomic testing. Firstly, prenatal testing is a form of testing aimed at providing information about the fetus’ health before birth, allowing the parents to make well-informed decisions about medical interventions, genetic conditions, and lifestyle choices. Preimplantation genetic testing is similar as it allows for the ability to be screened for genetic conditions before embryo implantation in the uterus. While these tests may seem beneficial, they come with a few implications. The fundamental issue lies in striking a careful balance between using genetic data to understand possible health hazards versus modifying unborn children using that same data. Genetic testing raises serious ethical questions about the commodification of life and its potential to contribute to social inequality, such as the possibility of selective abortions based on genetic traits. In addition, there is a possibility of embryo wastage, which is the unavoidable result of eliminating embryos judged less desirable based on genetic markers. Embryonic wastage has sparked many discussions on the value we place on human life and the limits of scientific meddling in the normal course of reproduction.

Primarily,  racial and ethnic disparities in genetic testing are the byproducts of various factors such as socioeconomic status (SES), inter/intrapersonal norms, cultural behaviors, and more. Moreover, minority and lower SES populations often lack knowledge about genetic testing due to inadequate information provided by their providers or lack of resources. In the article “Barriers to the Use of Genetic Testing”, Suther points out in their article, the medical system is not tailored to these communities, leading to a lack of trust and communication between the patient and the physician. Focusing on promoting diverse participation in genetic testing and understanding cultural nuances when it comes to educating these groups regarding genetic testing could truly change a family’s life.

One of the other main ethical concerns regards embryo wastage and genomic editing. There are two sides to the blurred line to the ethical debate: genetic modification can be used to prevent or treat certain genetic conditions that could be fatal to the unborn child, or genetic modification can be used to create “customized” babies such that those with undesirable traits get eliminated.  The first argument takes a look more at the technicality of this situation; as Robert states, if people are essentially free to choose if and when they want to reproduce, then they should also have the right to select the characteristics of their child. If given the chance, who wouldn't want to give their children the best chance of survival with modifications that can potentially prevent many diseases, enhance muscle tone, slow aging, etc? 

While this line of reasoning focuses on the well wishes of the child, it does not consider society as a whole. If every parent wants their child to have a specific skill, or look a certain way, where would diversity go? As mentioned before, genetic testing is primarily only available to those in higher SES, and it’s most often those in the majority who are the most informed on the implications of such advanced technology. With that, those in higher SES have the advantage of creating offspring with the most desirable traits, potentially worsening inequality between those unable to do the same.

Ultimately, the decision lies in the hands of the patients, and the provider must guide their patients into making well-informed decisions. Understanding one’s true intentions behind testing, pushing more resources and education to those in the minority with little to no knowledge of such advanced providers, and improving the regulation of genetic testing are potential solutions to improve genetic testing.