February 13, 2013
Have you heard of the term “designer babies”? Thanks to technology that is advancing at breakneck speed, parents can now “design” their babies. The health and appearance of future children no longer has to be left completely to chance. Preimplantation genetic diagnosis (PGD) is the reproductive technology that makes this possible.
The process of PGD was created in the mid-1990’s for parents to be able to detect anything potentially harmful for the future child, before the pregnancy began. It is the testing of embryos that were created through in vitro fertilization for three main things: genetic diseases (e. g. Huntington’s disease), sex-linked genetic diseases (e. g. Duchenne Muscular Dystrophy), and chromosomal abnormalities (e. g. Down syndrome). In addition to the above, PGD can currently also be utilized for sex selection, savior siblings, and selection of eye color, hair color, and skin color. Scientists predict that in future years, PGD will be able to prevent disabilities and diseases that occur after birth, such as cancers, asthma, heart disease, and strokes. Further into the future, it is predicted that complex human characteristics, such as leanness, height, temperament, and intelligence level, could be determined through PGD.
Along with all of the advancements and new opportunities this technology brings, it also raises new ethical issues and questions. Is it right for parents to be able to determine the sex of their child? Are savior siblings morally acceptable? Should parents be able to control the intelligence level of their child? Countless more ethical questions have surfaced. This paper will address one of these questions: Does preimplantation genetic diagnosis cause discrimination against the disabled?
PGD involves the testing of numerous embryos, not just one. After all of the embryos have gone through screening and received a diagnosis, the parents choose one embryo to implant and the others are usually discarded. PGD is a process of selection, not prevention. In other words, PGD is not the prevention of a single embryo from having a disability; it is the selection of an embryo without one. It is argued that, because most parents select against the disabled embryo(s), PGD causes discrimination against the disabled, for the disabled embryos never receive the chance to live.
Another argument is that, although one couple’s use of PGD may not constitute discrimination against the disabled, as Sigrid Graumann stated in Preimplantation Genetic Diagnosis—A Questionable Procedure, PGD itself as a “social establishment of a procedure, the explicit goal of which is to prevent the existence of sick and disabled people” does discriminate against the disabled. This position contends that, regardless of the parental motives of the embryo chosen for implantation, PGD causes discrimination against the disabled because it exists for the purpose of preventing a certain type of people from entering the world.
Both of the above arguments are addressing this issue regarding discrimination against the disabled currently. A third concern is that PGD could cause discrimination in the future. Some argue that if the use of PGD becomes very widespread in the future, this would result in a very, very small population of disabled people. Because there would be so few, they would be isolated, stigmatized, and discriminated against by the non-disabled majority.
Before analyzing these arguments and presenting the countering views, let us take a closer look at the meanings of discrimination and disability in this case. The Oxford English Dictionary defines discrimination as “the unjust or prejudicial treatment of different categories of people”. The prejudicial and unjust treatment in this issue would be the denied chance to live that most disabled embryos receive, the overall goal of the use of PGD technology to eliminate disabled people, and the possible isolation and stigmatization of the disabled in the future.
World Health Organization defines disabilities as an “umbrella term, covering impairments, activity limitations, and participation restrictions. Impairment is defined as “a problem in body function or structure”; activity limitation is defined as “a difficulty encountered by an individual in executing a task or action”; and a participation restriction is defined as “a problem experienced by an individual in involvement in life situations.” By this definition, the range of conditions that we can understand as disabilities include physical and cognitive handicaps, sensory disabilities such as deafness or loss of sight, cognitive disabilities such as Autism or Dyslexia, and many more.
Next, let us examine the views that counter those that have been stated above. It is argued that PGD is not ethically or morally wrong and does not cause discrimination against the disabled because it is upholding the right that all parents have to raise a healthy, nondisabled child. It states that a couple’s use of PGD as an individual parental decision is not discrimination toward the disabled. This would be countered by the previous argument discussed stating that all embryos have the right to life. Both of these arguments depend on one’s personal belief regarding embryo status. For some, the embryo is already a living being because it has the potential of becoming a human being, and therefore should be accorded the same right to life as living people do. For others, the embryo is not a living being because it has no consciousness and therefore should not receive the right to life. However, the right to life argument not only states that PGD causes discrimination, but it also goes against the PGD technology itself because at the end of the procedure, there is only one embryo that will enter into the world. No matter which embryo is selected, be it disabled or not, there are always some that are discarded. Therefore, the right to life argument, if applied to all embryos, is a stance against the entire PGD process as a whole.
A second argument states that PGD is not the direct cause of discrimination. It can be a means through which discrimination against the disabled can be manifested, however the source of discrimination is not the PGD technology, but the intolerance and prejudice that exist in our society; the act of discrimination does not come from the scientific process but from the people. For example, it has been claimed by disability activists that many doctors and clinicians, who oversee and regulate the PGD process, often overemphasize the burdens of raising a disabled child and hold biases towards bringing a disabled child into the world. In this situation, it is the doctors and clinicians who are discriminating, not the technology. In some cases, it is the parents who hold prejudiced views against the disabled and again in this scenario, the discrimination is from parents not PGD. Therefore, as T. S. Peterson stated in Just Diagnosis? Preimplantaion genetic diagnosis and injustices to disabled people, “it seems more effective to fight the obvious causes of discrimination, such as intolerance and egoism, to reduce discrimination than to abandon PGD”. This also ties into preventing discrimination in the future. If society is educated about the immoralities of discrimination, specifically against the disabled, even if there is a very small minority of disabled people, discrimination against them cannot be completely eliminated, but can be dramatically be minimized.
Like the argument stated above, I believe that the root of discrimination does not come from the PGD process itself, but from our society. If society did not look upon disabilities as something negative, the PGD process in the first place would not be needed. It is evident, however, that often times disabilities result in negative consequences such as pain, physical and/or cognitive limitations, medical complications, shortened lifespan, etc. Preventing these consequences and preventing disabilities is considered universally good. We must also keep in mind that the process itself involves the selection of an embryo, not a living, breathing, human being. It is true that all embryos have the potential of becoming a human being, but this does not mean that they are granted the same rights as people, specifically in this case, the right to life.
However, regardless of whether you believe that embryos deserve the right to live like human beings or not, it is evident that disabled embryos that are prevented from further developing, ultimately prevents the birth and therefore the existence of disabled people. Is the prevention of the existence of disabled people totally justified by the prevention of disabilities overall? The issue regarding PGD and discrimination against the disabled boils down to this question.
There is no one right answer; there is no single solution. As mentioned previously, there are so many different types of disabilities. There are illnesses that cause pain and shortening of life, there are physical handicaps, cognitive disabilities, and many other subcategories that all fit under the one great umbrella that is disability. The answer to this question of justification may differ based on the specific disability that is involved.
For example, cystic fibrosis is a very painful and life threatening disease with no known cure. If this is the disability that is involved, the selection against this embryo that carries cystic fibrosis, and ultimately the prevention of a person with cystic fibrosis, can be justified because of the severe pain and drastic shortening of life that this particular disease causes. However, the situation may differ if another type of disability is involved; for example, deafness. A deaf person may be physically and cognitively healthy and “normal”, just deaf. Deafness in most cases does not cause severe pain or shorten lifespan like cystic fibrosis does. There is no known cure for cystic fibrosis, but cochlear implants can provide hearing to the deaf. Therefore, is the prevention of a deaf person as justifiable as the prevention of a person with cystic fibrosis? Is it justifiable at all?
By the definition of a disability previously stated above, deafness is considered a disability. The impairment of deafness is the absence of one of the five senses; an example of activity limitation would be difficulty in speech; not being able to listen to music would be an example of participation restriction. Because deafness is a disability, it is therefore justifiable in prevention. The question remains if deafness is as justifiable as preventing the birth of an embryo with cystic fibrosis. Unlike cystic fibrosis, deafness usually does not cause pain or a shorter life span, and is generally not life threatening. A deaf person may be physically and mentally healthy and just as able-bodied as those who are not deaf. Deafness may also lead to the above-average development of other senses. However, being deaf also denies a large range of human experiences that are associated with hearing. Deaf children also usually require separate schooling with tuition. R. Chadwick and M. Levitt quote in their paper, Genetic Technology: A Threat to Deafness, a hearing parent who has a deaf child: “Her deafness . . . is a loss; a risk to safety as she walks along a busy street, a barricade to the world of music”.
Overall, I believe that deafness is a disability. Therefore, preventing the birth of a deaf embryo is justifiable. However, the justification of this disability is not as strong as that of cystic fibrosis because deafness, unlike cystic fibrosis, (generally) is not life-threatening, and does not cause pain and shortened lifespan.
There are just two examples of different disabilities, but there are many others that would lead to countless situations and ethical dilemmas. It would be impossible to create a single set of rules or regulation laws that decide which types of disabilities can be prevented, and which types cannot.
This leads us to the overall question of: should we continue in the use of preimplantation genetic diagnosis? It is inevitable that this technology will continue and advance because of the great scientific potential that it has. Therefore, it is important to begin addressing these issues and educate the public on this new technology, especially because of the many ethical questions it raises that have never before occurred. Currently, regarding the disabled population in our society, it is not considered out of the ordinary for there to be disabled people. However, in the future, what if this changes? What if, due to PGD, a new and higher standard of what is considered healthy and “normal” is created? Should PGD be regulated? And if so, how should it be regulated? How far should we go in the use of PGD?
Preimplantation genetic diagnosis raises countless other complex ethical questions, and is still a relatively new and unfamiliar process, the consequences of which are not certain yet. Because of the ethical issues that it raises and the potential that it has to change human reproduction, and ultimately human society, it is crucial that we start to establish the boundaries of this science before the technology advances even farther.
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Alexis Kim is currently a sophomore at Kent Place School. The Bioethics Project sparked her interest because of the complex, multi-dimensional ethical issues and questions that the topic explores. She has been researching the technology of pre-implantation genetic diagnosis and the ethical implications it has regarding discrimination against the disabled. Through this project, she has learned about not only the ethical issues in her personal research topic, but also about many others that have risen from various scientific advancements in our society. The entire Bioethics Project has been a very valuable experience for her, and she hopes to take the knowledge and skill-sets from this experience and apply it to a broad range of studies in her high school career and beyond.