The Ethics of Gene Therapy 1
The Ethics of Gene Therapy
Matt Boylan
CreightonUniversity
The Ethics of Gene Therapy
Gene therapy has become an increasingly pertinent subject in recent times. The technological advancement in the field of genetics has raised a number of philosophical, religious, and ethical questions in the process making scientific strides.A great number of such questions remain unanswered. The alteration of genetic material has the ability to resolve a great deal of medical problems if it is correctly applied. If misapplied, however, such technology could conceivably cause further social and ethical problems for the human race at large.
Before launching into an ethical and religious discussion of gene therapy, it is important to understand precisely the techniques and approaches gene therapy employs. The most common methods currently available for genetic alteration make use of retroviruses. In this process, a specific set of three genes is knocked out of the genome of the natural retrovirus (Cummings & Klug, 2003). Next, the cloned and amplified human gene is inserted in the place of the knockout virus gene. The genes removed from the retrovirus eliminate its fecundity. Essentially, the virus is made impotent and not allowed to reproduce as it would naturally. Then, the affected human tissue is infected with the genetically altered retrovirus. The transfer of genetic material into the nucleus of human cells is facilitated by chemical assistance. Effectively, the recombinant virus DNA is injected into the nucleus of the human cell and integrated into the genome. Once the novel gene has established a presence in the human genome, it is transcribed and translated as if it were a gene that had always been a part of the genetic composition of that individual. The protein products of the genetic alteration are then able to displace the products of disease causing genes. In this way, the diseases and disorders that are caused by genetic influences can be ameliorated through gene therapy (Cummings & Klug, 2003).The first successful gene therapy procedure was conducted in 1990 on a child with severe combined immunodeficiency (SCID) (Cummings & Klug, 2003).This disorder affects the immune system, rendering it almost completely nonfunctional. For this reason, children with SCID rarely survive to puberty because they are seriously affected by what would normally be minor infections. The gene that causes SCID was isolated, and it was determined that the disorder was monogenic (having a mutation at a single gene). The responsible gene coded for a protein that was absolutely necessary for proper immune system functioning. Through the use of a retrovirus, the child made a reasonable recovery and leads a normal life today (Cummings & Klug, 2003). However, gene therapy is by no means a perfect science; many trials were not successful in even partially treating patients. Not every procedure was met with perfect success because the human cells are not always infected by the retrovirus, and transduction of genetic information does not always occur (Boylan & Brown, 2001). However, the methods and procedures by which genetic transfer occurare improving constantly by way of intense scientific research.
There are two ways in which gene therapy can be administered. Firstly, it is possible to conduct therapy on the living body tissue. Such methods are commonly referred to as somatic gene therapy (Annas & Elias, 1992). By way of this technique, the genetic changes that occur via the retrovirus vector are specific to the individual undertaking the procedure. Furthermore, the alteration of genetic material is not transmitted to future generations. Conversely, the alternative approach to somatic gene therapy is germ-line gene therapy. Germ-line gene therapy affects the gametes of the individual undergoing the procedure (Annas & Elias, 1992). As such, the future progeny of that individual will consequently bear the genetic changes made during the procedure. Germ-line gene therapy is by far the more permanent and contentious of the two types of therapy. The permanent “improvement” of the genetic composition of the human race is obviously a far more controversial subject because its application has a greater affect on the gene pool of the race at large. However, it has been suggested that the only path to actually curing such genetically based disorders is by taking advantage of this form of therapy (Annas & Elias, 1992).
The ethical implications of both somatic gene therapy and germ-line gene therapy are comprehensive in scope. Somatic gene therapy has the potential to ease a great amount of pain and suffering caused by ineffective genetic information. Historically humans have supplemented the products of their genes with nutritional decisions, behavioral actions, and medical endeavors. Somatic gene therapy could be the most basic strategy for improving the life and health of individuals in a genetically supplemental manner. If the genetic diseases and disorders can be cured on the level of the genes themselves, then what better way to serve medical purposes? Such a therapy simply accomplishes the same end by a different, more direct means.
Yet, there are ethical problems with somatic gene therapy that accompany the possible benefits previously outlined. Such problems arise in light of the fact that there are different ways in which somatic gene therapy can be applied. Obviously, scientific and medical research ought to benefit those with genetic illnesses. The more important question then arises: what constitutes an illness? Many people are plagued by Tay-Sachs disease, SCID, and cystic fibrosis. What of the people that are plagued by high cholesterol, obesity, and dwarfism? Some people could possibly decide that cosmetic shortcomings, facial asymmetry, and other superficial phenotypes ought to be included under the heading of “bad genes.” With such an undefined philosophy of what constitutes genetic illness, one risks falling prey to the ethical anathema of eugenics (Berger et al., 1996). A semblance of distinction has been made in regards to such ethical conundrums. Negative gene therapy is defined as those genetic alterations that are intended to resolve health problems. Those genetic alterations that are solely intended to improve a healthy individual’s genome are defined as positive gene therapy (Berger et al., 1996). The differences between these two applications of gene therapy are significant indeed. Genetic improvement of characteristics that are not directly related to one’s health or necessary for survival would lead to the eventual manufacturing of phenotypic traits. Such a lack of control on the genetic market serves no medical purpose, and further has the potential to evolve eugenic tendencies. Historically, eugenics has repeatedly violated the basic human rights and moral good of humanity as a whole. Such efforts towards racial, or more specifically phenotypic, hygiene have resulted in the death, oppression, and general mistreatment of individuals in every occurrence. Somatic gene therapy that is not medically sanctioned and necessary would be yet another instrument that could be exploited for such ends. As such, our society must be cautious in the application and implementation of such a tool. Somatic gene therapy ought to only be utilized under conditions in which the health of the individual undertaking the procedure will benefit greatly. Gene therapy intended for the purposes of superficial or cosmetic benefits ought not to be carried out. Therefore, as a society, legislation ought to be passed which limits the scope of somatic gene therapy in a reasonable and fair way. Negative somatic gene therapy ought to be encouraged, while positive gene therapy ought to be prohibited.
Finally, the general safety and welfare of the patients receiving somatic gene therapy must be realized and respected. Gene therapy is contemporarily a fledgling science. Researchers and medical physicians must proceed carefully and reasonably with the patient’s well-being in mind. There remain health risks that include the spreading of the retrovirus and its genetic contents to tissues other than the tissues that are targeted for therapy (Campell, Tudge, & Wimut, 2000). This risk ought to be professionally assessed and taken into account. As with any other medical procedure, techniques improve with time and experience. In the infancy of gene therapy, precautions must be taken in order to protect the ethical principles of medical endeavors.
The other brand of gene therapy, germ-line therapy contains a distinct collection of ethical and moral concerns. As with somatic gene therapy, germ-line therapy has the possibility of treating and eradicating a great number of genetic plagues. Germ-line therapy is unique in that the affected tissues include the reproductive tissues (Boylan & Brown, 2001). As such, future generations will bear the results of such procedures in their own genetic composition.Therefore, germ-line therapy is a more permanent solution to genetic diseases and disorders because the genes which cause such disorders would be replaced, and the alterations would be preserved in the genome of future generations. Germ-line therapycould be viewed as a more efficient and humane approach to genetic disease treatment (Annas & Elias, 1992). The future generations of unborn humans would be spared the pain and trauma of living with such diseases and possibly undergoing somatic cell treatment themselves. Instead, the genome would have been “cured” in advance, affording future generations an opportunity at a normal existence.
Doubtlessly, the human race would benefit greatly from the ultimate extinction and eradication of devastating genetic diseases and disorders. Yet, here are many ethical dilemmas which result directly from the sheer permanence of germ-line gene therapy. A rash and swift extermination of genetic illnesses permanently could have destructive effects on the evolutionary future of humanity. Human knowledge is shortsighted and quite limited. To think that humans could possibly have the intelligence to predict the evolutionary climate of the future, or bear the responsibility for such alterations in the human population is excessively presumptuous and proud (Annas & Elias, 1992). The reason that sexual reproduction has survived and prospered is that it perpetuates on the concept of diversity. It is through variation that genetics retains a certain degree of plasticity with which to adapt to novel environmental pressures. For example, sickle cell anemia, some speculate, developed as a medically beneficial phenotype in environmental situations with high rates of malaria infection (Boylan & Brown, 2001). Malaria is a blood born pathogen. Those individuals with sickle cell anemia have a drastically decreased risk of contracting malaria because their blood cells cannot carry the malaria pathogen. However, in environments that do not present a high rate of malaria infection, sickle cell anemia is deleterious (Boylan & Brown, 2001). As evidenced in this situation, environmental pressures directly affect the survival of all living organisms.Furthermore, such environmental pressures often change. The genetic variance of a population helps the species to hedge its bets and survive. If humans were to decide to reduce the variance of the species genome permanently, then those humans ought to know absolutely the environmental conditions that future generations will face. Furthermore, one must note that on an evolutionary scale many genetic products that were once deleterious or neutral have evolved to become neutral or beneficial to an individual (Annas & Elias, 1992). In other words, the genetic disorders that now plague the human race may not be harmful in the future, and might even be advantageous to survival. Therefore, altering the genome of any individual in the germ-line has permanent effects that are not necessarily known to those making the alterations.
There are yet more ethical quandaries that arise in the critical evaluationof germ-line therapy. Firstly, in America and Europe a precedent has been set in legal and ethical medicine stating that the rights of those not able to defend themselves should be defended in cases of medical procedures. The mentally handicapped, mentally ill, young children, and newborns are protected from the imposition of medical treatments that would necessitate consent (Annas & Elias, 1992). In terms of germ-line gene therapy, this ethical policy can be liberally extrapolated to include the genetic composition of future progeny. In other words, germ-line therapy affects directly the health and welfare of individuals not yet conceived. Truly, there are a number of medical treatments that also affect the future of progeny. However, no such treatment affects future children as directly or as singularly as does germ-line gene therapy. As Alexander Capron (1990) has said:
The major reason for drawing a line between somatic-cell and germ-line interventions… are that germ-line changes not only run the risk of perpetuating any errors made into future generations of nonconsenting “subjects” but also go beyond ordinary medicine and interfere with human evolution. Again, it must be admitted that all of medicine obstructs evolution. But that is inadvertent, whereas with human germ-line genetic engineering, the interference is intentional. (Annas & Elias 1992, p.147)
Also, there remain the clinical risks mentioned previously in the discussion of somatic gene therapy. The clinical risks are heightened to a certain extent however because even less experience and scientifically based knowledge has been gained in the specific field of germ-line therapy (Campell, Tudge, & Wimut, 2000). Finally, there are a number of social concerns that one must consider in due course. Germ-line gene therapy might unfairly burden future generations with facing the problem of genetic discrimination. Historically, racial discrimination (another form of genetic discrimination) has been a repeated offense in many cultures. Time and again, certain ethnicities and cultures have oppressed and stereotyped those of a different background. Germ-line gene therapy offers another avenue of discriminatory possibility based on genetic alterations or the refusal to take such liberties. Also, parents bringing children into the world could feel socially pressured to have their genes and therefore offspring “cured.” Financially, insurance companies could potentially require or persuade their clients to receive expensive and extensive genetic treatments in order to avoid the further costs of covering affected children. Such a move to require germ-line gene therapy would make the most sense to insurance companies in order that future profits would be more secure (Annas & Elias, 1992). Finally, and most importantly, the social implication of permanently altering genes in light of past eugenic movements remains a weighty issue. If positive gene therapy and germ-line gene therapy were both allowed to persist, almost certainly the world would see a strong second coming of eugenic ideology (Berger et al., 1996). Why wouldn’t parents and nations desire to improve their children by making them the brightest, healthiest, and most advantaged children possible? Those people that lacked the financial capital or influence would be deemed inferior, and subjected to the discrimination of those possessing “superior” genes. Considering the entirety of germ-line gene therapy, such means are difficult to justify. Naturally, the correct application does provide humanity with the substantial benefit in terms of medical practice. However, the ethical implication of correctly and incorrectly applying such methods of medical procedure make the application of germ-line gene therapy, whether positively or negatively applied, impossible to excuse.
Finally, it is important to consider the religious and theological implications of gene therapy in our contemporary understanding of God. Gene therapy by nature transfers the control of genetic traffic from the hand of nature to the hands of humanity. Such a powerful capability must be cautiously approached from a theological standpoint. Many have stated that man, by pushing forward the discovery and employment of genetic technology, has desired to play the role of God. To a certain extent such a statement is valid. Humanity perpetually strives toward the improvement and control of its environment. From taming the wilderness frontiers to scientific pursuits, humanity has proven this desire. Genetics is no exception. Humanity has, and will, continue to attempt improvement in all facets of life. Gene therapy is an especially controversial subject because genetic information is the essence of what makes us human. When humans unravel and piece together completely the knowledge of genetics, an understanding of the biological processes, functioning, and ultimate humanity will be achieved. Many believe that in such a scientific manner, man will have no place for a higher power and will effectively “play God.” Yet, such perceptions are misleading. Through an ethical and religious approach to genetics, man will find the correct uses and misuses of such information (Gehring, 2003). Further, such an understanding of man’s basic humanity has the potential not to destroy God, but rather to reinforce the magnificence of biological life. Pope John Paul II hasbeen quoted as saying, “Science can purify religion from error and superstition; religion can purify science from idolatry and false absolutes. Each can draw the other into a wider world, a world in which both can flourish… We need each other to be what we must be, what we are called to be.”