Genetic testing raises ethical and health concerns

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(Kim Bolduc | Concordiensis)

Technological progress has graced the modern world with unmatched efficiency, unfathomable knowledge and the highest quality of life; today, we live more comfortably than we ever have before.

Not only has technology granted humanity the most pleasing quality of life to date, but also a wealth of knowledge ranging from the amount of calories burned per day on a Fitbit to the probability of contracting a rare genetic disease through genome testing.

Knowledge is at our fingertips, now, more than ever. Because of this huge bank of information, people are as much aware of political, social and medical problems as they are stressed about them. In fact, our generation is one of the most stressed. And what could this be due to? Perhaps knowing too much.

Time Magazine’s article, “Want To Know My Future?” delves into the complex ethical issues intrinsic in genetic testing. In the article, the author is skeptical of the consequences that knowing your probability for a future disease can cause.

In fact, this article introduces an interesting idea: perhaps genetic testing can lead to more harm than good.

The question of prenatal testing, especially, poses dangers to the fetus and also raises ethical issues of abortion.

Likewise genetic testing on children, while it may allow parents to make informed decisions and even change a child’s future, it is, in fact, invasive and too often abused, ultimately endangering the well-being of families.

Although genome testing can be beneficial to those willing to alter their lives in hopes of preventing a possible genetic disease, such as diabetes, the disadvantages are far more alarming and can in fact contribute to the stress and depression among many people.

What might be the benefits of genetic testing? The Science Daily reported on the possible benefits of genome testing for children suspected of having autism in an article entitled, “Newer genetic testing methods may provide benefit for children with suspected autism.”

The information gathered in the article from a study done in The Journal of the American Medical Association explains how testing for Autism Spectrum Disorder (ASD) in children was effective and caused many parents (80%) to opt for testing in children younger than 2 years old. The genetic testing for this specific disorder is especially effective in young children and perpetuates the support that genetic testing publicly receives.

In cases such as these, genetic testing seems like the right option; however, there are many instances when genetic testing can only inform both children and adults of a seemingly unavoidable future with a disease, such as Alzheimer’s.

In turning the attention more toward prenatal genome testing, the risks and disadvantages become more obvious. An article entitled, “Sequencing The Unborn,” in The Science Magazine sheds light on the alarming dangers of fetal testing. Fetal DNA can be acquired from fluid in the mother’s womb or a small section of the placenta. This testing technique, however, requires the insertion of a needle or tube into the mother’s womb and can cause 1% of mother’s to miscarry as a result.

On the other hand, in the article, there is another less invasive way of sequencing the unborn child’s genome. This method uses the father’s saliva and the mother’s blood to comparatively predict the genome of the baby. After the child was born, the test proved that the predictions were 98% accurate.

While this method is less invasive, it is also less accurate. The article gives a shocking statistic: “While the fetal DNA analysis had predicted 39 of those, it also wrongly predicted 25 million other potential de novo mutations. This huge false positive rate could suggest that a fetus has a genetic disorder it doesn’t.” In addition to this, scientists do not know the effects or manifestations of many mutations found in the genome.

While there are significant deterrents in the methods used to test a genome and its accuracy, there are also inhibiting factors in considering the psychological repercussions for the families involved.

In many cases, the genome could reveal information that could predict a tough or unpleasant future for the unborn child, causing the parent’s to make the most challenging decision. In this sense, the question of abortion comes into play. If the child is predicted to contract an unavoidable and untreatable genetic disease, then the parents could make the decision to abort the child.

Genome testing has made it possible, therefore, to rid the population of unhealthy and genetically mutated people if more parents choose to abort.

Ethically speaking this is both unfair to the child and to the parents, who are put in a horribly difficult situation. If the quality of life for the child were going to be negative, then wouldn’t it be better for the parents to spare their child the pain?

But perhaps there is a chance for the child to live happily in spite of the genetic disease. Science can never be entirely accurate, especially in this case of predictive science.

It is important to weigh the benefits with the disadvantages, and it seems that genetic testing, in more cases, leads to challenging decisions and information that would be more effectively dealt with if acquired at a later date.

There is so much information gathered from a genome test that it becomes an ethical issue in deciding whether or not to inform a patient of all the possible defects, and if not, where to store this information.

As genome testing has reached an all time low in cost, only $1000, more people are opting to get the test. This specific and personal information can cause knowledge on the one hand and grief on the other.

What if the results of a genome test for a child show that there is no treatment and that they are destined to live a life of hardship?

In knowing this information, how is a parent to react? Moreover, what if the probability for a specific genetic disease is predicted, but on the off chance, the child doesn’t contract it? The family would be waiting for a horrible destiny, unaware that it could also never happen.

In light of this information, I think it is less advantageous to test children’s genomes.

The heartache for the parents can cause strains in relationships and in prenatal cases; the question of abortion can pose major psychology problems for the mother.

The prenatal techniques of genome testing are either dangerous for the unborn child or inaccurate using the less invasive technique.

Knowing too much may be the result of genome testing. And the question is: when do we draw the line? How much knowledge is too much?

 

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