In 2002, a deaf lesbian couple selected the embryo of a deaf child over others, sparking debate on whether the decision was in the best interests of the child. Through the use of In-Vitro Fertilization (IVF) and Pre-implantation Genetic Diagnosis (PGD) people have more choice in the genetic characteristics of the embryos implanted, which are screened through the use of PGD. Since this is now possible, is it right to choose an embryo, knowing that the child will have a disability? Is it right to choose to not have a child just because he or she would have a certain disease or disability? Would your opinion change if the disease was fatal or nonfatal (asthma or dyslexia)? Even though parents now have this option, do you think this is something that everyone should be obligated to do? This project will focus on the Principle of Procreative Beneficence (PB), a term created by Julian Savulescu, and the ethics of a “moral obligation” in relation to nonfatal diseases such as asthma and dyslexia versus situations where the condition causes a significantly diminished quality of life such as in the case of Huntington’s disease (HD) and muscular dystrophy (MD).
In Julian Savulescu’s 2001 paper first mentioning his Principle of Procreative Beneficence, Savulescu offers the reader a scenario. He asks the reader to imagine that he or she is playing the Wheel of Fortune. A giant wheel has marks from $0 to $1,000,000 separated in $100 increments; however this wheel is hidden from the player. The wheel is spun and the amount that it lands on is placed into Box A. It is spun again and that amount is placed into Box B. The player is now given a choice. You can either choose Box A or Box B. If you choose Box B however, in addition to whatever amount is in the box, a dice will be thrown and you will lose $100 if it comes up 6. Savulescu then discerns that the rational answer would be to choose Box A as it is the option that presents the best outcome. However, why should Box B be discarded when there is only a one in six chance that the dice will turn up six? In addition to this, as previously stated, there is no way to know that Box A presents a better option than Box B. It is equally likely that Box A may only contain a sum of $100 and that Box B may contain $1,000,000 of which a subtraction of $100 still presents a better option than Box A (Savulescu 2).
Choosing between embryos of which one is shown to carry a gene for a certain disease or disorder while the other does not is very similar to this scenario. While one would feel that the most rational answer would be to choose the embryo without a propensity to a disease, one will never know if the afflicted embryo has a greater chance at a better life. Though the embryo without a disorder would lead a physically healthy life, the affected embryo could end up with a better life regardless of this as while the person may have to live with a disease or disorder, this may be preferable to not existing at all.
This paper will focus on the Principle of Procreative Beneficence (PB), a term created by Julian Savulescu, and the ethics of a “moral obligation” in relation to nonfatal diseases such as asthma and dyslexia versus situations where the condition causes a significantly diminished quality of life such as in the case of Huntington’s disease (HD) and muscular dystrophy (MD). This principle maintains that prospective parents or single reproducers are morally obligated to choose, out of the selection of embryos presented to them, those possible children with the greatest chance of having the best life when quality of life refers to how an individual’s well-being is affected by a disease, disability or disorder. Savulescu also argues that prospective parents going through in-vitro fertilization (IVF) are obligated to use the medical procedure of pre-implantation genetic diagnosis (PGD) to select those embryos based on the presence or absence of both disease traits and non-disease traits such as intelligence. I will focus on disease traits as selection of embryos based on non-disease traits beyond sex is not yet possible.
The Principle of Procreative Beneficence holds that the decision of which embryo to choose should be according to the result of PGD in spite of whether this maintains or raises social inequality. The aspects of Savulescu’s Principle will be analyzed in regard of the ethical values of beneficence and fairness. Arguments both against and in defense of the Principle of Procreative Beneficence will be presented based on the conducted research. Julian Savulescu argues that Procreative Beneficence is necessary and rational, therefore making it morally required to do. However, while there are fatal diseases such as Huntington’s disease and muscular dystrophy, not all people with diseases and disabilities view it as the be all end all. This point will be further explored with the examples of asthma and dyslexia as though the Principle holds that parents have good reason to select the best child to have the best life, the concept of what qualifies as the “best life” is relative to the situation. In the defense of PB however, it can be argued that parents want to choose the child they feel best equipped to raise as not all people born with a disability view it as a hindrance to their daily life. After evaluating arguments for and against the principle of Procreative Beneficence, it holds true that humans are not morally obligated to choose an embryo that does not have a disease or disability.
Through the use of PGD people have more choice in the genetic characteristics of the embryos implanted. PGD refers to Pre-implantation Genetic Diagnosis which is a procedure used prior to implantation of a fertilized egg to help identify genetic defects within embryos created through in vitro fertilization to prevent certain diseases or disorders from being passed on to the child. This process begins with the normal process of IVF in which eggs are retrieved and fertilized in a laboratory. Over the next three days, the embryo divides into eight cells after which one or two cells are removed from the embryo. The cells are then assessed to determine if there is a chance for that embryo to inherit a gene for a disease or disorder. After PGD is performed and the embryos are considered free of genetic problems, the embryo is placed back in the uterus and implantation is attempted. Additional embryos that are free of genetic problems may be frozen for later use while embryos with the genetic disorder are destroyed. PGD is a procedure that can benefit any couple that is at risk for passing on a genetic disease or condition such as carriers of sex-linked genetic disorders, single gene disorders or chromosomal disorders. Women who are age 35 and over, experiencing recurrent pregnancy loss, or who have had more than one failed fertility treatment are also possible candidates for PGD. This procedure is considered to have many benefits as it can test for more than 100 different genetic conditions. In addition to this, it is performed before implantation therefore allowing the couple to decide if they wish to go forth with a potential pregnancy now knowing the risk of the potential child having a disease. It also enables couples to pursue biological children who might have been hesitant before due to a reluctance to pass on genetic diseases or disorders.
Procreative Beneficence implies that couples are morally required to use genetic tests for non-disease traits in selecting which child should be brought up regardless of whether or not this increases social inequality as Savulescu states that “Morality requires us to do what we have most reason to do”(Savulescu). This principle however, does not take into account the difference between debilitating diseases and non-debilitating diseases. Huntington’s disease (HD) is an example of what is considered debilitating. It is a neurodegenerative disease that causes the progressive breakdown of nerve cells in the brain and is an inherited autosomal dominant disorder. If the parent is heterozygous for HD, the chance that he or she may not pass on the infected allele is equal to the chance that it will pass on. In this case, the chance for a child born from this parent to have Huntington’s disease is 50%. However, if the affected parent is homozygous for the dominant trait of HD, the chance that the child will inherit and express the disease is 100%. Muscular dystrophy (MD), another incapacitating disease is a group of diseases that cause a weakened musculoskeletal system and a loss of muscle mass. I will focus on Duchenne Muscular Dystrophy. This is the most common type and is known to typically affect boys. These diseases are enervating as they lower one’s standard quality of life to a point where their daily living is significantly affected.
Opposing these diseases however, are those that are non-debilitating such as asthma and dyslexia. Asthma is a respiratory disease that causes airways to narrow and makes breathing difficult. For some people, the symptoms can flare up in certain situations such as during exercise, which may be worse when the air is cold and dry. Occupational asthma is triggered by workplace irritants such as chemical fumes, gases or dust while allergy-induced asthma is triggered by particular allergens, such as pet dander, cockroaches or pollen. Dyslexia is learning disability that is mainly characterized by difficulty reading due to problems identifying word sounds and relating them to letters and words. In children, dyslexia can present itself with a difficulty with learning new words and remembering sequential order. In teenagers and adults, symptoms of dyslexia include a difficulty reading, with summarizing, memorizing, and others. Asthma and dyslexia are considered non-debilitating diseases as, while their symptoms present a challenge to daily life, they can be more easily managed than those of more serious diseases such as MD and HD.
Beneficence as an Issue
Savulescu’s principle adheres to the ethical value of beneficence as his drive behind the introduction of his Principle was to argue that couples should select the embryo with the most likelihood of having the best life based on genetic information collected from procedures such as PGD. There are quite a few benefits to this. Should an embryo be implanted and a child born through PB, that child would live the best possible life that it can as it would not be adversely affected by any disorder. This holds true when quality of life refers to a person’s well being as affected by a disease, disorder, or disability. However, PB does not always coincide with the beneficent principle of doing well unto others and preventing or removing harms to improve the situation of others. While Procreative Beneficence argues for choosing the embryo that will have the best life, Savulescu asserts that this should be allowed even if it maintains or increases social inequality. This would potentially have more of a negative than positive impact on people with non-fatal diseases rather than fatal diseases, should this principle be put into effect. Those people would be told that diseases or disabilities such as theirs are as severe as Huntington’s disease or muscular dystrophy.
Additionally, arguments can be made as to who exactly PB is beneficent toward. While PB may have benefits to the implanted embryo in that it would not be affected by any disease or disability, the embryos that are not selected can not be considered recipients of beneficence. Though it is true that had any of the afflicted embryos been implanted, they would have potentially had a disease, disability, or disorder, this may be preferable to not existing at all. Furthermore, it can be said that while Savulescu’s principle is beneficent to the unborn children, it can also be seen as mainly beneficent to parents. By allowing parents the option to choose an embryo that is not affected by a disease, disability, or disorder, parents would be able to avoid the challenges and additional emotional and potentially financial stress of caring for the affected child. Although Procreative Beneficence gives a healthy embryo a chance to live an unaffected life, it also allows parents to choose the child that they feel best equipped to raise. While this can mean choosing the healthy embryo, there is also the chance that an embryo that has shown to have a disease, disability, or disorder can be considered what the potential parents feel most comfortable and prepared to raise.
Fairness as an Issue
The uncertainty of possible future for each embryo also brings up the principle of fairness. According to Julian Savulescu’s reasoning, only one embryo will live anyway so it makes the most logistical sense to choose the one with the highest chance of survival and the greatest possibility of living a healthy life. Conversely, it can be argued that adversity gives value to life and that one can come out better for it. In addition to this, there is no guarantee that the selected embryo with no predisposition to having a disease like asthma or dyslexia will necessarily have a higher quality of life than the embryo with a propensity to a type of disease. It also can be argued however, that there is also the possibility that by choosing the embryo that does have the predisposition to a certain disease; it is just as likely that you could be discarding someone like Mozart without asthma. In either case, there is a distinction to be made that one is not simply choosing between the “Embryo A” with or without asthma, but actually the choice must be made of either “Embryo A” or “Embryo B”.
The idea of Procreative Beneficence also raises further questions. Should this be put into practice, would it be unfair to a person whose parents went through IVF but did not select the embryo screened through PGD and therefore brought that person into the world knowing that he or she may have a propensity to a potentially painful or fatal disease? Alternatively, is this a worse prospective than not having been brought into the world at all? For this particular embryo, the only option besides potentially having a painful or fatal disease would be to not exist as a result of not being chosen. On the other hand, said person could just as well only be afflicted with a disease that would not have such harmful effects and would in fact enable him or her to go about daily life just the same as anyone else. Examples of this are those people who have non-fatal diseases, such as asthma or dyslexia, and still go on to be successful in life. However, in a society where PB is common practice, does a couple’s decision to have a child in what would have been considered the “natural way”—that is to either undergo IVF without making a choice between an embryo with a propensity to a disease or disorder and an embryo without, or to simply produce a child through sexual intercourse—make them morally wrong as their child has the chance of having any number of diseases?
A Personal Perspective
In certain situations, Procreative Beneficence can be considered the best choice such as in the case of seriously debilitating diseases or conditions. Opinions on what is considered debilitating can be relative however, and therefore an official list should be created of what diseases qualify for an option of Procreative Beneficence. If adjustments, such as taking a certain medication regularly, diet change, assist of a medical device, etc., cannot be made in a person’s life to lessen the effects of the disease and bring him or her closer to the standard quality of life, that disease will be included on the list. Fatal diseases with no cure, such as Huntington’s disease and muscular dystrophy, would qualify for inclusion along with diseases or conditions which are extremely painful to live with. Again, opinions on what is considered “extremely painful to live with” can be relative and therefore the list of what diseases qualify for an option of Procreative Beneficence would have to be created based on factual medical information regarding the diseases. If adjustments, such as taking a certain medication regularly, diet change, assist of a medical device, etc., cannot be made in a person’s life to lessen the effects of the disease and bring him or her closer to the standard quality of life, that disease will be included on the list.
There are many famous people in history that had disabilities, however as evidenced by our continued recognition of them today, these challenges did not hold them back. Inventor Nikola Tesla, known to have had dyslexia, invented the Tesla coil in 1891—long before there was any special help given to people with such a disability—something that is widely used today in radios, television sets and other electrical equipment. Even authors such as Jules Verne, writer of classics such as Twenty Thousand Leagues Under the Sea and Journey to the Center of the Earth, and Lewis Carroll, whose famous writings include Alice’s Adventures in Wonderland, Through the Looking Glass, and the poem Jabberwocky, were known to have dyslexia. Evidently, they did not allow their disabilities to stop them from doing what they loved and going on to be recognized through the years as literary geniuses.
Many famous and successful people that we know today also have disabilities. Orlando Bloom and Keira Knightley, for example, both have dyslexia. Actors and actresses have to read and memorize pages upon pages of scripts for each role that they take on, however they as shown by their well-known roles in the Pirates of the Caribbean film series and many others, Bloom and Knightley do not allow their disability to hold them back from what it is they are passionate about. Both players of football, Tebow and Beckham also both have asthma and refuse to be held back as well. Non-fatal diseases, disabilities, or disorders such as asthma or dyslexia should not be the main reason to choose an embryo that does not have that disease as they do not excessively detract from the average quality of life for a person.
While there is good to be done in the application of the Principle of Procreative Beneficence, the fairness of PB is precarious as society has a tendency to thrive on perceived notions of superiority and therefore people who begin to procreate using the principle may then look down on others who do not. I am not of the opinion that Procreative Beneficence is a moral obligation as morality is relative to the person. Therefore, what Savulescu considers to be the right choice is mainly based on what he sees as moral whereas another person may be of a different opinion based on what he or she believes in. While I do not consider PB to be a “moral obligation” as stated by Julian Savulescu, I do believe that Procreative Beneficence may be ethically permissible in situations where the alternate would be to let someone suffer throughout their entire life unnecessarily. People grow up and are taught difference morals and what may be considered right to do to one person may be a drastically wrong action in the eyes of another. This is seen especially in the case of the deaf lesbian couple that wanted to have a deaf child as they felt that they would be best equipped to take care of a child that is the same as they are. However this received mixed responses. While some people sympathized, others called their decision “selfish” with Nancy Rarus of the National Association of the Deaf even saying, “I can’t understand why anybody would want to bring a disabled child into the world”. Procreative Beneficence has potential to benefit society but only when placed under the previously specified limitations of the list where PB can only be used in specific cases so as to prevent issues with the procedure.
In the future, regardless of whether or not Procreative Beneficence is officially put into effect, there are concerns that may come into play. While PB may not emerge as a mandatory practice, should there be widespread use, the common mindset might become that Procreative Beneficence is something that everyone should be doing. This may cause conflict between what would be the majority, who commonly use PB, and the minority, who choose not to follow the practice of Procreative Beneficence. Additionally, while eugenics is a fair, albeit extreme possibility, something along these lines may be possible starting on a smaller scale. Should the technology develop further, people who initially used PB as a way to bring a better, healthier child into the world may decide to take their child’s betterment to another level. What if people begin to select male children as they have more privilege in society? What if this goes further and people then choose white male children as they would have the benefit of privilege and a low possibility of any sort of prejudices holding them back? Regardless of any limitations or control placed on this potential practice, Procreative Beneficence is made up of a plethora of slippery slopes as while there can be many positives to such a principle, there are quite a few negatives as well.
By Regene Nolan