Genetic Testing And Gene Therapy: Ethics And Economics

Imagine a future in which parents can give their unborn child the best genetic traits possible, grooming them for genetic perfection. Through genetic testing and gene therapy, modifying and enhancing genetic attributes is becoming a reality. These industries are growing rapidly, with 1,000 genetic tests already available to the public (Papalia and Martorell 61). Genetic testing and gene therapy have the potential to profoundly affect society ethically and economically.

In order to understand why these two medical practices may disrupt societal order, it is important to know what they are. Genetic testing examines someone's DNA, identifying changes in their genes and providing information regarding treatment and prevention of potential illnesses. As technology in the field continues to progress, scientists have become increasingly able to identify genes that may cause disorders or diseases in individuals. Furthermore, genetic testing allows for gene therapy to occur. Gene therapy replaces or improves damaged genes in three different ways – by replacing a defective gene with a healthy copy of it, turning off genes that cause problems, or adding genes to help fight a disease (“Gene Therapy Basics”).

As gene therapy technology continues to develop, the future may allow for parents to enhance their child’s genes in order to give them the best genetic attributes possible, before they are born. This is already possible to a certain extent via in vitro fertilization and a few other procedures. In vitro fertilization allows parents to prevent genetic problems in the conception of a child by retrieving mature eggs from the ovaries, then screening them for genetic disorders. (“In Vitro Fertilization”). It is easy to imagine the potential ethical consequences this practice could have on society. Societies may split up into genetically perfect and genetically flawed groups, increasing the division that is already so prevalent in the world today. If genetic therapy continues to develop and parents decide to give their child the best possible physical and mental traits, then individuality will be limited, and nature will take a backseat to science.This raises an important ethical question. To what extent do we allow science to trump nature?

Genetic testing could have serious implications if governments decide to allow the genetic makeup of their citizens to be made public. For example, China is currently implementing a social credit system which ranks citizens based on their behavior. If someone is seen smoking in a non-smoking area, their social credit will go down. A citizen with low social credit may be barred from traveling, denied access to the best schools and jobs, or forced to have throttled internet speeds (Ma). If China decides to compile the genetic information of its citizens in the future, this data could be used to raise or lower an individual’s social credit. Other governments could implement similar systems as well. Private business entities can also use this information to discriminate against people. “Already, there are people who have been denied insurance, employment, and loans based on their genotype” (Cyr and Blandford 8).

Another issue regarding genetic testing is the impact that it has on the person being tested. If the test is done on newborn children without their consent, it could affect how they view themselves growing up, for example. They might view themselves as defective, especially if the genetic defect cannot be corrected. Furthermore, the genetic tests could have a widespread effect on their family and potential partners. Genetic testing can also impact how parents view their children. Parents “may stigmatize or reject children with abnormal genes…” (Cyr and Blandford 8).

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However, it’s important to note the immense benefits associated with these fields that can greatly improve society. They allow prospective parents to be able to see potential effects of having a child, and the ways in which they can make sure their child is born healthy. In addition, genetic testing provides important information for treating and preventing illnesses. The ability to treat people’s genetic disorders and allow them to live a happy, healthy life is valuable. Currently, gene therapies “are being tested as potential cures or treatments for sickle cell, Duchenne muscular dystrophy, and a range of other diseases” (“Can Gene Therapy Halt Diseases”). These therapies may also be used in the future to treat certain types of cancers, inherited disorders, and infections (Cyr and Blandford 8).

There are also economic implications to these practices. Genetic tests can cost anywhere from $100 for straightforward procedures, and up to $2000 for more complex tests. If multiple family members need to be screened in order to obtain meaningful data, the overall cost will increase. Some states will cover part of the cost. Direct-to-consumer tests are not covered by most health insurance companies, because they are done without a referral from a doctor (“How Much Does Direct-to-Consumer Genetic Testing Cost”). As of right now, there are three gene therapies being approved by the FDA (“What is Gene Therapy?”). As the healthcare system evolves to value-based payments, there is growing concern about the economic impact of gene therapies.

The manufacturing process of gene therapies is costly because every therapy is individually made for each specific patient. In addition, the duration of effect is uncertain because we don’t have data following the patients to see if they are still cured decades later (Arons). Gene therapies cost around $1 million per treatment, which only makes it accessible to the wealthy. According to Ophthalmic specialist and consultant Irv Arons, “Especially in disorders with small patient populations, like many ocular diseases, the price per dose of a new therapy must be high – which can prevent patients from accessing it.” He goes on to say that long-term payment plans are not the answer, due to the constant debate surrounding the ethics of drug pricing (Arons). Arons instead suggests a system in which value is secured through annuity payments, saying “The price… should depend on both the degree and the duration of efficacy…” Annuity payments could be more easily implemented in countries with single-payer systems like Europe. However, because the United States has multiple healthcare providers, implementing an annuity payment system would be more difficult (Arons).

As gene therapies progress and become more mainstream, they have the opportunity to create large economic growth. There are currently four FDA approved private firms that are already competing for a share in the market, and constantly making advancements (“Gene Therapy Market”).“The global gene therapy market size is evaluated at $710 million as of 2018 and is anticipated to grow with a CAGR of 31.5% throughout the forecast period 2019-2025” (“Gene Therapy Market”). Why is this level of growth being projected? The prevalence of genetic disorders that are so costly to treat or do not have a cure, paired with the abundance of side effects and trauma caused from prescribed drugs or therapies make genetic therapy a desirable alternative (“Gene Therapy Market”).

The advancements in genetic testing and gene therapy have far-reaching implications ethically and economically. The potential ability for gene therapy to affect society by allowing parents who have the economic means to give their children the best genetics possible is alarming. Furthermore, people’s privacy may be at risk if governments decide to collect the genetic data of their citizens and make it accessible to the public. Genetic testing and gene therapy can also negatively affect families by causing people who have genetic disorders in their DNA to feel negatively about themselves, which can cause repercussions throughout their lives. However, it is important to remember the immense benefits associated with genetic testing and gene therapy. They have the capacity to prevent diseases caused by genetics and treat the root cause of illnesses, instead of just masking the symptoms like pharmaceutical drugs. In addition, they have the potential to treat incurable diseases. From an economic standpoint, genetic testing and gene therapy have high costs that most people cannot afford. Most insurance companies do not cover the cost of treatments, and implementing an effective payment system could be difficult. The economic potential of these two practices is very promising, with a substantial amount of growth projected in the future. Overall, it will be interesting to see the affect genetic testing and gene therapy have on society as a whole.