Parental Responsibilities, Cultural Aspects, and Harm of Choosing The “Flawed” EmbryoMarch 7, 2023 No Comments Genetically Modified Life Ariel Sykes
I Want a Deaf Child: Parental Responsibilities, Cultural Aspects, and Harm of Choosing The “Flawed” Embryo
By Anna Hogarth
When you hear the saying, “like father like son” or, “the apple doesn’t fall far from the tree,” you may think, the child is like their parents. But what about when parents want to select a child who is like them? For example, some Deaf couples are trying to use embryo testing and selecting technology, called Preimplantation Genetic Diagnosis (PGD) to intentionally select the embryo with the inherited deaf gene. The complexity of this case is greatly affected by the rich Deaf community in which Deaf people can take pride in. Because of this community, some Deaf people consider themselves part of a linguistic minority and not disabled, and sign language is just another dialect. In this paper, the Deaf community and values associated with each side will be explored. Are the parents making the best decision for their child? How does the physician and society play a role in the case, both directly and indirectly? Finally, what would the child think if they learned they were chosen to be deaf by their parents? This genetic screening technology can impact the way we think about communities and people who are different or similar to us when faced with questions such as, “should deaf couples be allowed to select the deaf embryo?”
Table of Contents
- Factual Background
- Motives for Choosing the Deaf Embryo
- A Comparison To Achondroplasia
- Beneficence: Choosing the Best Child
- Authority: Who Has the Right to Decide?
- Moving Forward
Imagine you are a physician at a clinic. Your role is to screen embryos for certain diseases and select the one without the disease. Today, a deaf couple enters your office requesting to have a deaf child. You know it is possible to guarantee that their child be deaf, but you are conflicted. A million thoughts race through your mind at once: this deaf child can be part of the deaf community, which their parents are such a big part of. Your goal is to choose the child which would have the best life; aren’t you denying it? Do you even have the authority to deny them their right to choose? If you were the physician, what would you do? This topic of embryo selection is one of the many ways genetic engineering can affect the genetic makeup of the human race, something that, with the advancement of technologies, can become the norm. Should we be embracing this, or keep things “natural”? This paper will discuss specifically selecting the deaf embryo, but more specifically in terms of the deaf community and if the child will have an equal chance at living their best life being deaf. Additionally, the parent’s responsibility and the idea of doing no harm will be applied. The question which this paper revolves around is: is it morally justifiable for deaf parents to intentionally select the deaf embryo?
In order to develop a full understanding of why someone would want to choose the deaf embryo, it is important to know general information about PGD and the vocabulary that will be used. PGD, or preimplantation genetic diagnosis, is the process of screening embryos for genetic defects before placing them in the woman. First sucessful in 1989 but still relatively new, PGD is often used when couples carry traits for risky diseases and want to ensure a healthy child. The process involves in vitro fertilization, or IVF, in which the doctor removes eggs from the woman and sperm from the man and combines them in a petri dish. Next, the zygote is left to divide into eight cells. Then, one cell is removed and its DNA is tested for the presence of the disease. The embryo without the unwanted disease is implanted and pregnancy continues normally. Any other embryos that are not implanted during this process can be discarded, frozen, if the couple wants to use them later, or donated for research. PGD is often beneficial for parents who carry genes for debilitating diseases and are worried that if they gave birth naturally, they would risk having a baby with the disease. It is also beneficial for parents who carry the genes for a sex-linked disorder and wish to select the embryo of the other sex to ensure that they do not inherit the disorder (American Pregnancy Association).
Many issues arise when selecting a baby using PGD. Some people believe that when you discard the unwanted embryos at the end of the process, you are denying this future baby a chance to live. This means that when the sperm and the egg combine, the baby has been given life and that the discarded embryos were, in a way, killed. Some worry that selecting the genes for their baby is too invasive and is “playing god”; they should let nature and probability decide which genes are selected, instead (Macklin).
Another controversial topic about PGD is the message it conveys about people with diseases or disabilities. If one couple selects the embryo without a certain disease, are they saying that people currently with that disease have a worse life than those without? If parents are selecting the embryo without the gene for the disease or disability because they fear that the child will not have as successful of a life, it is also important to note that many people with debilitating disabilities and conditions have been very happy and successful in life and the issue is raised as to can quality of life really be ensured genetically? Who has the right to make opinions about these future lives? Remember, as with any decision made using PGD, anything that a couple does is permanent, as it is part of the child’s genes. While raising a child a certain way or giving them different opportunities during their life alters their way of living, they can reverse this, but with selecting a specific trait for their child, there is no way for the child to reverse their parent’s life-changing decision. The use of PGD will be discussed in this paper, more specifically if Deaf couples want to use it to select the deaf child.
In this paper, the word “flawed” will be used. It should be stressed that the “flawed” embryo just means the embryo with the genetic trait that most people would consider not normal, that it will affect the child’s everyday life and make them different from others. For example, an embryo with the genetic trait for deafness could be considered flawed by many because they will not have complete function of one of their five senses and therefore will have a different life than any other “normal” child. However, this term is complex because many believe that being deaf should not be treated as a flaw but more a difference that should be embraced. This nuance will be discussed more throughout the paper.
Motives for Choosing the Deaf Embryo
Why would someone want a deaf child? After being asked this question, people often think, how could parents do something so harmful to their baby? Firstly, in order to develop an understanding about why someone would want to choose a deaf child, it is important to learn about the deaf community. It is also important to remember that these facts do not pertain to all deaf people and are just from what a small number of people think about being deaf; we can still learn from what they have to say and try to better understand the deaf community.
While many people lose their sense of hearing whether through aging or from an accident or illness, there is also a large population of people who inherit deafness. People who are deaf at birth, or have congenital deafness, may have stronger views on selecting a deaf child. Since this type of deafness is hereditary, often times couples who are deaf will have children who are deaf and a large deaf generational family and community will form. Congenital deafness is also important because being deaf could be considered a civil rights issue instead of a problem which needs to be fixed so the person can function “normally”, as being deaf has been the norm for them their entire lives.
Deafness is different from other conditions because some deaf people consider themselves part of a minority group and not disabled. While people may think of deafness as being harmful because the parents are limiting their child’s right to an open future, many people believe the benefits of their community counterbalance the downsides. Tomato Lichy, a Deaf parent, when describing being deaf to The Guardian, says, “Being deaf is not about being disabled, or medically incomplete – it’s about being part of a linguistic minority. We’re proud, not of the medical aspect of deafness, but of the language we use and the community we live in.” What Lichy says about being a linguistic minority is key because sign language could be thought of more as a dialect and not as a way of coping with being deaf. This deaf community also has its own language, sign language. In addition to American Sign Language, French Sign Language, and such, there are also different dialects; people use slightly different hand motions the same way there are different accents in the spoken language. Some people notice that when signing they can be more expressive with their facial expressions and body motions. Lennard Davis, a child of deaf parents, says in the book, Far From the Tree, “To this day if I sign, ‘milk,’ I feel more milky than if I say the word. Signing is like speech set to dance,” (Solomon). Another unique aspect about sign language is that two people signing must look at each other and make eye contact instead of turn away as many hearing people often do, which can increase understanding and focus. This intricate web of languages and the distinctive types of conversing that sign language brings emphasizes the richness and diversity of the Deaf community.
There are many different ways in which Deaf people are proud of their community. First, Deaf people use an uppercase “D” when describing their community and a lowercase “d” when describing the medical condition of hearing loss. Additionally, some people use the phrase “deaf gain” instead of “hearing loss,” because they have gained so much from the rich community they are a part of. Since deaf people usually use their sense of sight more, they can often spot Waldo faster than a hearing person, increase their ability to use peripheral vision, notice more small details, and much more. They use these “gained” abilities, as well as the bonded community they form, to their benefit. For example, Deaf architects have created what is called a “Deaf space” which includes less visual obstructions and more open, airy, bright spaces instead of the traditional enclosed, private spaces in buildings, which not only gives them more freedom to see each other sign, but provides a new approach to the layout of community buildings. While some may say deaf people have lost the ability to speak orally, some may say they have just used the original mode of communication, which is using body motions. It is proven that babies learn to use body motions to communicate before they say words (Evans) , which highlights the fact that Sign Language is a very human, original way of communication and not just a way of coping with being deaf. Lastly, in addition to the strong identity of the Deaf community, involvement can include Deaf music festivals, stand up comedy, sports leagues, theaters, schools, and more.
Often times when one thinks about deaf people, a specific device comes to mind: the cochlear implant. Cochlear implants are electronic aids which send sound signals to the brain. Often times young deaf children and their parents are confronted with the prospect of having them fitted with the implant, which would help them hear. However, the downsides of this procedure include different or lower sound quality than normal sounds, a surgery to implant the device, extensive speech therapy, and costs (American Speech-Language-Hearing Association). This device sparks controversy in the Deaf community because some deaf people simply like being the way they are and would otherwise be changing their identity if they could hear. For example, Austin Chapman -a rock climber, golfer, and blogger who spoke to Telegraph– does not use his hearing aids when he is climbing and golfing because he needs the quiet in order to focus, and uses them more when having conversations with others and listening to music. He says, ““I actually feel bad for hearing people. I wish that more people could experience the power and peace of utter silence.” Some deaf people feel saddened when watching their children hear again with cochlear implants because they are losing this trait which their parents identify with so strongly.
How does this relate to PGD? Now that trait selecting technology is becoming more readily available, a small number of deaf couples have expressed interest in using it to intentionally select a baby with the deaf gene.
Making this decision is different from gene editing for many reasons. First, these embryos are just the product of the father’s natural sperm and the mother’s natural eggs. The “unnatural” aspect of this procedure is the fact that the couple is specifically choosing the embryo with the deaf gene present, as there can be a small to large number of embryos with this gene present, given that the parents carry the trait. Remember that this specific baby would either be born with the deaf gene or not be born at all. This is different from gene editing because you aren’t editing the genes but rather choosing one with the hearing gene or a separate one without. This point reminds people that they are not denying their child rights because they just would not have existed. Lastly, a similar claim can be made that the couple would only be denying their child rights if they took something away from them which they already had, like deafening a hearing child, but as this child was a natural combination of already present genes, they were not denying them anything; in fact, they could essentially be giving this specific embryo a chance to live. Similarly, if some Deaf couples only want to have a Deaf child and PGD is the only way to guarantee this, then allowing them to select the deaf embryo would give them a chance to be parents.
Today, this dilemma is relevant in many clinics, as a survey showed that 3% of 190 clinics questioned had allowed parents to select the embryo who has a condition usually described as a disability (Sanghavi). On the other hand, in the UK, a bill was passed in 2008 making it illegal to select the embryo with a “disability” when ones without this gene are available. This bill has sparked a controversy for some deaf couples, like Tomato Lichy and his wife mentioned earlier, who want to have a deaf child. In the end, the ability to allow Lichy to select the deaf embryo is decided by lawmakers and clinicians, which will be discussed more in the stakeholders section.
The deeper issue about this dilemma is the fact that Deaf people are a minority group. If the physician said that the couple should not have a deaf baby because they will go through more hardships, what does that say about others? It would seem wrong to advise an African American couple to not give birth to a black baby or to advise a couple to not give birth to a girl because they will socially have an easier life. So how is deafness any different? Selecting the deaf child could instead be considered as another way of preserving a cultural bloodline, something that bonds families and gives them generational pride.
A Comparison To Achondroplasia
Deafness is a very specific condition because of the community deaf people form and the different ways they can be involved in a hearing world. However, with PGD, people with other conditions which one may call debilitating often express the same interest in selecting the embryo with the same trait as them. Achondroplasia, a type of dwarfism, is a bone growth disorder which causes short stature. Infants with achondroplasia may have decreased muscle tone and delay in motor skills, apnea, troubles bending elbows, bowed legs, increased number of ear infections, and/or spinal stenosis. People with achondroplasia have an average height of four feet and although people with achondroplasia can live a “normal” life, they can sometimes be medically advised not to play certain sports and there are often social impacts of being less than average height. (healthline). When comparing the questions as to should parents be allowed to select the flawed embryo, both deafness and achondroplasia raise similar issues.
Celia is a mother with achondroplasia. In an interview for a book called Genetic Dilemmas by Dena S. Davis, Celia says she has resized her whole household to fit her height and says an average sized child would not fit in. Also, like deaf people, people with achondroplasia have formed a community. LPA, or Little People’s Association, was a big part of her life and her son, who has short stature, had “practically grown up in LPA.” Simply being able to fit in with their family and community is another reason why people would select the flawed embryo. Similarly, parents with short stature could feel that they are not protecting their children physically if they are significantly shorter than them. In both cases of achondroplasia and deafness, the parents want to share similar traits, but more emotional reasons may arise such as being able to be a proper guardian to your child, bond with them more closely, and share the same household structure and community as them. In comparison to deafness, achondroplasia may cause more medical procedures in some cases, which could include surgeries to the spine, for example (healthline). Since people with achondroplasia may have more hospital visits and health problems in adolescence, does this mean that it would be acceptable to choose a deaf embryo but not an embryo with achondroplasia? Where do we draw the line? However, in both cases if the child would like to be average height or hear, they would have to go through a complicated, long, and sometimes painful process. There are benefits and downsides to both cases, but one must remember that choosing the embryo with this specific gene can be considered harmful.
Beneficence: Choosing the Best Child
To summarize what has been stated until now, many deaf or achondroplastic people would select the child with this trait for many reasons: they want their child to be part of their community, want their child to be similar to them, and many more. While for many parents this may be the case, others will select the hearing child or the child with normal stature for the reason of beneficence.
Beneficence is the idea that a person should do the action which would benefit others. Procreative beneficence, created by Julian Savulescu, states that parents should select the embryo who has the least diseases and therefore will have the best life. Using this principle, the couple should select the hearing child because they will have a “better” life. But does being deaf mean you really get less opportunities to have a better life? In this case, the deaf community plays a large role in how the child’s life and opportunities will be affected. The World Federation of the Deaf states that 70 million deaf people use sign language as their first language; is this a large enough community for the child to have varied opportunities to be successful and happy if they spend most of their time in it? In relation to statistics, in 2012 only one third of deaf people graduate from high school, only one fifth complete college, and deaf adults generally earn about a third less than hearing adults (Solomon). Should these statistics be considered when making the decision to select the deaf child, since the child would statistically have a less chance of being “successful”, educational and income wise? Additionally, many deaf people are able to converse with hearing people whether it means having an interpreter stand beside them or learn lip reading and speaking skills. If the child was taught how to lip read and speak orally at a young age, they would be able to navigate in a hearing world more easily and they would, in return, have more opportunities in life.
The child’s ability to flourish in a hearing world is greatly affected by how they are raised. The parents can choose to give them speech therapy when they are young, which helps them speak orally comfortably. During this time they could also consider giving their child cochlear implants, which can help them hear. However, the parents have just enough rights to deny their child cochlear implants, and if the child decides they want them later, it is more difficult to learn how to hear and speak orally using them (American Speech-Language-Hearing Association). While these options do provide their child with more opportunities, it still limits their ability to communicate with hearing people, whether it is because they need speech therapy, need to read their lips, or need an interpreter to constantly stand beside them (Davis). Some may think that if they are putting their child through these difficulties then it should be their duty to select the hearing child so they immediately have the privilege of hearing; it is a birthright. However, after observing the ways in which Deaf people can communicate with hearing people, are they really “harms”? What if their opportunity to be in the Deaf community outweighs the harms? To reiterate on the point of Deaf gain, the benefits of being Deaf could be more important and perhaps a Deaf child will not feel the loss of being able to communicate easily with hearing people. On another note, when observing that not many -if any- people intentionally hurt their ears to make themselves deaf, it draws attention to the fact that a hearing person may not want to be deaf but people who were born deaf learned how to use deafness, something they have had their whole life, to their benefit. Additionally, hearing people can also sign, so they can also enjoy the benefits of the language. Using the principle of procreative beneficence, if a couple is given a choice between a hearing child and a deaf child, they would choose the hearing child, based on the available information and statistics.
The final alternative for choosing the flawed embryo, besides choosing the other embryo without this gene, would be to select naturally. Many people believe that you should not mess with probability. Using PGD means that someone is deliberately altering a natural selection process which happens in every living reproductive species. Another reason for choosing natural selection could be because parents believe that selecting for a specific trait means having biases and images of their ideal child, but parents love their child no matter what, and every future child should have an equal chance at living a life without it being pre chosen before birth. Lastly, some people with strong religious views believe that you are “playing God” when selecting specific traits, and this should be avoided. While comparing these arguments of natural selection, parental love, and religion to the values of a deaf community, it is important to remember that deafness is not considered a disability to many. If this outlook were used, the decision would not be so hard, as they would just be choosing another, equally successful life for their child. As these decisions do have to be made, who gets to have an input?
To summarize the paper so far, the Deaf community has been explored as well as comparisons and reasons for why a Deaf couple would want a deaf child. However, when confronted with the question, are we choosing the child who would have the chance to lead the best life? In all, while the implication of harm may be analyzed when deciding whether it is morally justifiable to select the deaf embryo, the decision is ultimately made by multiple people; who makes the final decision regarding this child’s life?
Authority: Who has the right to decide?
The stakeholders are people who play different roles in this case based on their job, experience, and authority. These are: the parents, the physician, and everyone else in the society. Each person’s role plays an impact on what influence they have over this child. For the people in our society, how does our view of deaf people influence what we think about the question, can the deaf couple choose the deaf embryo?
The parents have the final say as to which embryo they will choose, and one of the main controversies behind this is the question of, what is their parental responsibility? Should they select the child who would lead the most, as the hearing population might say, normal life? Or should they be allowed to select whichever child that they feel allowed to choose, in this case a deaf one? These questions relate back to the overall reason for why PGD was created: to give parents the ability to know what their future child’s genetics could be and make an informed decision based off of it. But what makes deafness so different? As a reminder, some clinics are allowing parents to select for the sex of their child even if they aren’t worried about sex-linked disorders, such as The Fertility Institutes. If these clinics are becoming more widely available, then cases such as deafness will soon be considered. If the fundamental idea of giving your child the best life is still current in this case, and if parents believe that a deaf child would have the best life in their family, then they should be able to make this decision.
The second stakeholder in this decision is the person from the introduction of this paper: the physician. The physician plays a vital role in this case because they are providing the parents with the opportunity to select the specific embryo they want. No matter what the parents choose, the physician is still the one who carries out the request to the scientist. Should the physician have a say in the parent’s decision? Should the physician be beneficent towards the parents and trust them that they are making the best choice for their child? When exploring whether the physician should favor the child or the parents, an issue arises about the child’s right to having a normal future. Right now, PGD can be used to screen not just for diseases present at birth but for late-onset diseases, susceptibility to cancer, and gender (Robertson); when do clinics draw the line when giving parents the option to change their child’s future? In relation to deafness, how much should they know and be involved in the deaf community in order to give informed advice to the couple? Could their status in their medical community be altered because they gave permission for something so controversial to happen?
When considering the parents, physician, and later, the society, who makes the decision? If the parents made the decision, then where do clinics draw the line? If physicians made the decision, are we really solving this issue, since future deaf couples may still push to choose a deaf child. In this case, if one clinic allowed selection but others did not, couples could be travelling from across the globe to use that clinic, which has happened at The Fertility Institutes in the case of sex selection. In this case, if society’s values and knowledge of the Deaf community changed, then perhaps we would have more informed, better educated discussions. Questions that could be considered are, how will the child be treated by society? Will they have enough opportunities?
Because it may seem hard for a hearing person to conceptualize why a deaf person would want a deaf child, emphasis could instead be placed on educating and providing more resources to include deaf people in the hearing world as well as spreading awareness about the community. If the ethical question is, is it ethical to select the deaf embryo, then knowing more about the deaf community plays a large role in the decision making process.
When searching google for “deafness”, the first results says, “treatment can help, but this condition cannot be cured,” (Hearing Loss). This shows that the first description a hearing person might read may give a false impression of a condition of much history, culture, and dimension. While they may be thinking more about older people who are losing their sense of hearing, it also includes the many people who were born deaf and do not believe their condition should be cured or treated in any way. Simply being able to provide more resources as to why some people believe that they should not be cured or treated can spread awareness about the issue. In any case, if hearing people are talking about the deaf community, they should do so with the utmost respect.
Being more inclusive is another way to help hearing people accept that deaf people have many opportunities. If more closed captions, for example, were provided in any public TV or screen, then hearing people would realise that this future deaf child could navigate and understand what the TV is saying; they are just as capable as any other hearing child in public places and in turn have less disadvantages in society. While many believe that this would never happen in reality, anything makes a difference. If a school started teaching their students sign language, imagine the huge benefit it would give to lessening the divide between hearing and deaf people. If the hearing population became more inclusive of deaf people and they were better educated about the deaf community, perhaps the deaf couple would feel more confident to choose the deaf child, since hearing people would be more accepting of them.
After analysing every aspect of this topic, I am still not sure what I would do if I were the physician. However, I strongly believe that anyone forming an opinion should get to know the Deaf community or at least a Deaf person, both of which I have not done physically yet. It is important to remember that Deaf people form a minority group with a strong identity. Denying the parents their right to choose the deaf embryo could give unwanted messages to the Deaf community that their lives are worse than hearing people’s. However, in remembering the value of beneficence and parental responsibility, is it in the parent’s best wishes to do this for their child? What would this child say if they found out their parents “made” them deaf? Lastly, do I, a hearing person, have a right to decide? For further investigation, I would like to look more into the history of the deaf community and link some of the topics related to deaf embryos to other gene modifying technologies such as CRISPR to find similarities and differences.
Moving forward, should rules be made and how should they be assessed? Should every physician be allowed to accept any parent’s request knowing it is in their best interest to provide for their child in the best way? Should the physician always deny the parent’s wishes to select for something other than a disease or disability already on a list? If so, what would that say about our society and culture if we forced deaf couples to select randomly, despite their request to choose? How would this decision affect the population of deaf people and the size of the deaf community? Again, they are a minority group, and we would never treat a certain ethnicity or racial group this way; so how is deafness different? If couples are allowed to select the deaf embryo, what about other traits like intelligence, sex, or physical ability? Regarding PGD and the selection process is a slippery slope and should be approached with caution and discussions before any decisions or rules are made.