The Ethical Issues of Gene Therapy

Like other revolutionary medical sciences, gene therapy entails its code of ethics and issues. What exactly are ethics? Princeton University defines ethics as "a system of principles governing morality and acceptable conduct". Medical ethics and ethics of science in general involve knowing what is acceptable and what is not in terms of research, treatment and cure. These limitations arise due to basic moral principles which cover human conduct.

So what are the ethical issues and issues of gene therapy? 


Moral Dilemma: Sharing Testing Results and Genetic Analysis

As we know, gene therapy carries a potential to revolutionize diagnostics, genetic testing and genetic analysis.

Partly because it is meant to be a more personalized form of medicine, gene therapy utilizes advanced forms of testing and diagnostics to develop knowledge of what form of therapy best suits a patient. Gene therapy, therefore, also involves extensive analysis of a patient's genome to determine possible effects of a treatment or cure which addresses a genetic disorder.

However, what if, during genetic testing, genes for other diseases and disorders are discovered? What if high risks for certain diseases are detected? Should the treatment providers share these results with the patient, especially if the condition of the patient (or his/her family) is already sensitive? To what degree should this information be shared with the patient or his/her relatives?

Also, do gene therapy providers reserve a right to choose not to share data which they would not like to, due to a number of reasons?

On the other hand of the same ethical dilemma, would a patient want to know certain results from gene therapy analysis/genetic testing? Many bioethics experts argue that certain patient data from a genome showing inevitable pre-disposition to a disease would promote side effects in the patient such as anxiety, depression, or paranoia, thus causing additional medical problems.

Finally, bioethics experts ask: what would be a patient's degree of accessibility to his or her genome/testing results? 

The image on the right display examples of situations which may arise in relation to genetics and genomic data. How would you address each situation? 

A Possible Refutation? A study published online in the New England Journal of Medicine reported that among 2000 people who bought genetic tests, 90% experienced no distress from the results. (Citation 81)

However, bioethics experts may still argue that the amount of people receiving negative influence from such gene therapy diagnosis is significantly large.


Natural State: Modifying Genes = Disrupting Nature and God's Work?

Arguments against gene therapy also often involve a philosophical and religious argument. 

Some bioethics experts and people argue that gene therapy involves modifying genes or genomes which have been given from birth; in other words, the entire genome is meant to exist as it has been created by God. Modifying a gene in any form violates the personal philosophical/religious codes of many persons, who believe that researchers experimenting with a gene are "playing God".  

Also, what effect would gene therapy have on natural human evolution? In terms of evolution, what would be the long-term consequences of gene therapy?


Lack of Clarity: What is a gene? What is a disorder? . . .

More than often, gene therapists will consult government-built references, such as the Human Genome Project, or other references to find and provide diagnosis for genetic disorders. However, some people and bioethics experts ask: What is a disorder? Who provides the definition for what is a disorder and what not? Is the definition open to opinion?

This ethical issue manifests itself in a variety of ways; a prime example may be dealing with Autism. A certain percentage of people believe that autism is a true disorder/disease which is meant to be treated. Another certain percentage of the population, however, argues that autism is not a disorder; rather, it is a part of humanity in a special way, and individuals with autism are not suffering at all.

Safety: What Does Modifying Genes Flamboyantly Entail?

Perhaps one of the most key ethical issues presented by gene therapy lies in one simple question; is it safe? Over the recent decades, scientists have made vast improvements in working with human genes. However, at the same time, as with many medical treatments and cures, a risk related to basic safety lies intact. The fact that gene therapy deals with directly editing the human genome and human chromosomes certainly does bring fear to the mind of many; what if something goes wrong? What if researchers/gene therapists accidently cause a mutation rather than destroying or removing one? What if the virus vectors being used to transplant genes become active or cause unidentified immune reactions or side effects? Technology, although a significant improvement over manual task-handling, still holds a small margin of error. What if this error presents itself as a mis-diagnosis for an individual after genetic testing for gene therapy? 

Will gene therapy make us intellectual property and products? (Image Citation 53)

A Summary of the Ethical Concerns.

After thorough analysis, the following ethical questions of gene therapy rise into consideration.

  1. Is gene therapy safe for those involved in giving or receiving the treatment/cure?
  2. Who defines what is a genetic disorder or disease?
  3. Are humans 'playing God' by modifying natural genes?
  4. Who determines how and to what degree results of genetic diagnostics are conveyed?
  5. Who determines the true rules and regulations governing gene therapy?


As with other medical sciences, gene therapy carries with it a code of ethics by which to operate. (Image Citation 48) 

What would you do in situations described above if you were the scientist, doctor, researcher/ gene therapist? (Image Citation 49)

Bioethicists ask: is gene therapy simply another form of "playing god" theory that seems prevalent in this era of medicine? (Image Citation 50)

What or who defines the ethics of gene therapy? (Image Citation 51)

At many times in its current stages, gene therapy can be seen as a potential danger due to its highly sensitive workings. (Image Citation 52)

Humanity: To What Extent Will It All Go? 

Gene therapy has and will revolutionize the way humans will perceive medicine. However, ethicists ask, is this a revolution for the better of for the worse, in terms of humanity? Does modifying genes to such a large extent continue to make us more and more artificial as time passes by? After some time of gene therapy, will we "be humans" or patented products?


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