Is It Your Right to Decide What’s Right? The ethics of using genetic testing to screen for adult onset diseases in embryos

kumar_500If you could use a technology that would allow you to see the fate of your child, would you? And would you still have that child if you knew that they were going to have cancer suffer or from a disease like Alzheimer’s in the future? Preimplantation genetic diagnosis is a process that can be used to screen embryos about to be used in in vitro fertilization for adult onset diseases, such as Huntington’s Disease or ALS, and detect predispositions to cancer. While PGD has helped lead to an increase in the number of successful pregnancies through IVF, many people argue that it is unethical to use this technology to screen for adult onset diseases out of concern for the potential future child. However, are these concerns enough to stop a parent from getting testing for their own child? These arguments and the ethics of limiting PGD for adult onset diseases will be explored in this project.


Introduction

If you could use a technology that would allow you to see the fate of your child, would you? And would you still have that child if you knew that they were going to have cancer or suffer from a disease like Alzheimer’s in the future? Although an instinctive response might be to say no, ideas about autonomy, informed consent, and the quality of life complicate the answers to these questions. Many parents grapple with these same questions when deciding whether or not they want to use preimplantation genetic diagnosis prior to the implantation stage of in vitro fertilization procedures. The ethics of its use and the issues of autonomy, informed consent, and the quality of life that were referred to will be discussed in this paper.

Scientific Information

Preimplantation genetic diagnosis (PGD) is a procedure used prior to in vitro fertilization (IVF). IVF is a process by which an egg is fertilized outside of the woman’s body  is then implanted into her womb by surgical means. PGD was first used in the year 1989 by Dr. Alan H. Handyside and colleagues. The technology was used to select for a female embryo in order to avoid an X-linked genetic disease, which would have presented itself had a male embryo been implanted (Dayal). During the PGD process, eggs are collected and fertilized, as they normally are in IVF. Embryos are then grown in the laboratory for roughly two to three days until they are made up of about eight cells. An embryologist then extracts two of the cells, called blastomeres, which are then tested for genes or chromosomal abnormalities that may cause some type of condition, such as certain physical traits. Based on results, parents select an embryo that is then transferred into the uterus.

PGD can easily screen for various physical attributes determined by single genes, such as freckles. It can also be used to detect polygenic traits, like hair, eye, and skin color, although less effectively. PGD is also very commonly used to detect biological sex. The use of PGD that will be discussed in this paper is the detection of adult onset diseases. PGD is useful in detecting many types of dementia or predispositions to them, such as Huntington’s Disease (HD), early-onset Alzheimer’s, and amyotrophic lateral sclerosis (ALS) . This technology can also be used to detect  predispositions to cancer by screening for certain genes, such as the BRCA1 and BRCA2 genes.

Often times, the results of these tests are not one hundred percent accurate. Statistics regarding accuracy will be discussed further in the “Informed Consent” section of this paper. Misdiagnosis can occur when technical procedures, such as the removal of cells from the embryo, are not correctly executed. Incorrect interpretations of test results may also lead to misdiagnosis (Wilton et. al).

PGD also cannot detect how severe the impact of a condition will be or when it will develop, and is often not one hundred percent definitive. Test results may indicate predisposition to an adult onset disease as opposed to a definite sign that one will develop in the future. For example, the presence of mutations in the  BRCA1 and BRCA2 genes indicates a higher risk (there is about a 50% chance of inheriting mutations in these genes from parents) for developing breast and ovarian cancer, but it does not mean that either of these cancers will definitely develop.

Huntington’s Disease provides a contrast to the BRCA1 and 2 genes, in the sense that if it is detected during the PGD process, it will most definitely develop (Myers). In the case of Huntington’s Disease, symptoms usually appear between the ages of 30 to 50, and patients have a shortened life expectancy (Alzheimer’s Association). Huntington’s Disease is not fatal by itself, but patients often die of complications related to the disease (Liou).  Patients often live perfectly healthy lives until symptoms present themselves. These symptoms present themselves on a spectrum once they do develop, as there is a range of severity in terms of how an adult-onset disease impacts a patient.

ALS is quite similar to Huntington’s Disease in the sense that patients tend to develop it between the ages of 40 to 70 and tend to live for 5 to 10 more years after symptoms present themselves. Although it is possible to conduct genetic testing for this disease, 90% of cases are sporadic ALS, meaning that they are not hereditary, so there is a varying degree of uncertainty when conducting testing and obtaining results. Patients can also live lives free of any atypical suffering that would be brought on by symptoms of the disease prior to its development.

Early onset-Alzheimer’s may also be detected through PGD. It often presents itself at about the age of 50 and is caused by hereditary genetic mutation. PGD for this disease is definitive. However, another form of Alzheimer’s known as “sporadic Alzheimer’s”, is not heritable and cannot be detected through PGD.  Again, patients can live healthy lives prior to  the development of the disease.

PGD’s Role Today

A susceptibility condition is a condition one is predisposed to developing because of a genetic mutation. For example, mutations in the BRCA1 and 2 genes indicate a proneness to cancer. Susceptibility conditions can be tested for legally in the US. As of now, it is legal to test for Huntington’s Disease, ALS, and mutations of the BRCA1 and BRCA2 genes in the UK. However, PGD is not utilized globally. The Catholic Church does not accept PGD, and other religious groups oppose its use. PGD is completely illegal in certain countries, such as Chile, Switzerland, China, the Ivory Coast, the Philippines, Algeria, Ireland and Austria. This could be considered a restriction on parental autonomy, or the rights of parents to make decisions regarding and for their children (which will be further discussed in this paper). It raises questions as to what are appropriate restrictions on parental autonomy  that protect the best interests of the future child; what type of quality of life children will have, whether or not it is ethical to allow testing that does not necessarily yield definitive results, which restrictions are unnecessary and strip parents of their right to make decisions, and about societal values overall.

When testing for any adult onset condition, many intricate ethical issues arise, especially those regarding autonomy of both parents and future children, informed consent, and the quality of life. Parents who test embryos for adult onset diseases may choose to have a child with or without an adult onset disease. Many concerns arise about parents perhaps opting out of having a child with an adult onset disease, thereby undervaluing the lives of those with such diseases. These concerns, along with concerns for a child’s future and autonomy, perceived qualities of life, and informed decision making will be analyzed throughout the rest of this paper.

The following ethical questions will be explored through discussing the angles of this issue in terms of parental autonomy, the quality of life, and informed consent within the rest of this paper: Are the ethical arguments presented against offering PGD for adult onset diseases reason enough to limit its use, and in what way? Are the ethical arguments that support its use strong enough to allow for its unrestricted use? If testing is permitted and information about the health status is discovered, should it be disclosed to the child?

Autonomy

The first ethical issue that is important to consider when discussing PGD for adult onset diseases is that of autonomy, or decision-making rights. The first way in which autonomy arises in this situation is when discussing the limitations on PGD. Limiting the availability of PGD in any way or for any usage would be limiting parental autonomy. Parental autonomy is “the right to control one’s own procreation unless good and sufficient reasons exist for denying a person that control,” (Bredenoord).  

Nadya Suleman, more popularly known as “the octomom”, exemplifies a situation in which parental autonomy was deemed to have been exercised beyond its bounds.  The court revoked the license of the fertility doctor who had implanted 12 embryos for Suleman, resulting in the birth of eight children. Although the doctor had carried through with this procedure in an  attempt to respect the wishes and rights of the patient, giving birth to so many children poses extreme risks to both the children and mother. Because of the risk that was posed to the children, the court said that the procedure was unethical, and that Suleman’s autonomy should have been restricted in this particular situation.

Parental Autonomy and the Burden of Care

The decisions parents make when exercising their parental autonomy are impacted by many different factors. One of these factors is the burden of care. The burden of care is essentially a complex that is “defined by its impacts and consequences on caregivers” (National Center for Biotechnology, The Burden of Schizophrenia on Caregivers: A Review). The burden of care may be felt financially. Parents might not be financially equipped to properly care for a child with an extreme and/or chronic illness or adult-onset disease. The burden of care may also be felt emotionally, as many parents struggle with intense emotions when watching their children suffer as their diseases progress. Parents also tend to experience feelings of guilt if they cannot help their children handle the costs of their disease in the future, even though children would eventually mature into financially independent adults who would handle the costs of their medical care on their own. Although the primary financial responsibility may not necessarily fall on the shoulders of parents at the time that the disease develops, they may feel as if they could have helped their child in handling finances or as though they could have prevented this burden from affecting the child had they conducted PGD for adult onset diseases.

Parents may also experience another form of guilt known as “survival guilt”. The term survival guilt is used to describe feelings of guilt that are commonly experienced by a person upon discovering that a family member has or has a predisposition to a disease when they themselves do not. Parents may opt out of having a child with a predisposition for an adult onset disease if they feel that they are incapable of providing the care necessary for that child financially, cannot emotionally handle having a child with these conditions, or are unable to cope with the burden of care overall.

Aside from the burden of care, planning for care is another argument that would support an unrestricted utilization of PGD for adult onset diseases. Parents who conduct PGD for adult onset diseases may voluntarily opt to implant an embryo with an adult onset disease if they feel as if they can care for it, or if the embryo has other desirable traits.  For example, there may be two embryos available for implantation, and the parents have decided to screen these embryos for sex and chromosomal abnormalities that might lead to chronic illnesses or adult-onset diseases. Upon testing, it might be revealed that one embryo is a female and the other a male, and that the female embryo has a strong predisposition for ovarian or breast cancer. The parents making the selection may feel strongly about having a girl, and choose to implant the female embryo despite the risk of the child developing cancer in the future if there is no other healthy female embryo available to them. They may then use the results of the testing to plan out medical care for their child. This would enable them to provide the best care for their child, which is something that is widely considered to be part of the responsibilities of a parent.  It is argued that by allowing testing, parents can financially prepare or seek out treatment for their children’s diseases earlier on, thereby enabling them to provide the best care possible for their children.

Children’s Autonomy and the Open Future Argument

In a liberal society such as the one we live in, allowing unrestricted parental autonomy may appear to be perfectly ethical. However, while it is crucial to allow parents autonomy so that they can make decisions that help them cope with the potential burden of care, it is also vital to take the autonomy of the child, or the child’s decision making rights, into account.

Consideration for a child’s future autonomy is a key point in an argument called the “open future argument”. The open future argument pushes for restrictions on parental autonomy to protect the child’s future autonomy. The argument maintains that, by restricting the parent’s autonomy, the child’s future is kept as open as possible, allowing them to exercise their autonomy at a time at which more treatment options may be available. Many argue that genetic testing is something that is not within the scope of the autonomy of the parent, but rather the child. While it is true that parents have medical decision making rights while their children are not yet competent enough to make them autonomously, it is possible for genetic testing to be held off and conducted only when the child is old enough to consent to it themselves. The preservation of a child’s autonomy is encouraged  in other areas of medical decision making, such as in the case of DSD (developmental sex disorders, in which decisions about reproductive anatomy come into play.) The American Academy of Pediatrics suggests that parents hold off on making any decisions about their children’s reproductive anatomy until the child is old enough to have a say. However, in this situation, a child has already been born and is recognized as an autonomous human being. An embryo cannot express its wishes, which further complicates the issue. While an embryo cannot express its autonomy like a human being in this situation, similar ethical concerns arise when discussing the open future argument in terms of PGD for adult onset diseases and trying to protect the best interests of a future child.

The concept of allowing greater options, as opposed to fewer options, is another key aspect of the open future argument. If parents were to conduct genetic testing and decide against implanting an embryo with an existing adult onset disease or a predisposition to one, that embryo is deprived of a chance at life and the opportunities that may have presented themselves during the time before the development of the disease. However, it is also true that if parents were to select an embryo with an adult onset disease that the other embryo would be deprived of a chance at life. In either situation, an embryo is not being brought to life, but in the first situation presented, many are concerned that the reason that the embryo is being deprived of a chance at life is because of its (predisposition to) disease, making this a form of discrimination .

The professional consensus on parents conduct testing maintains that “for adult onset diseases such as Huntington’s disease or Alzheimer’s disease, they unjustifiably limit the child’s options. Delay does not cause medical harm to children and by preserving their open future, we let them decide for themselves if they want predictive testing at a later time” (Kopelman 384).  While no child is currently alive to exercise its autonomy in the situation being discussed here, opting not to conduct PGD for adult onset diseases means that whichever embryo is selected will be able to fully exercise its autonomy in the future. If PGD were to be conducted, it could be said that children were being deprived of the chance at life and their future right to autonomy because of biases the parents had in selection. (For example, a parent who opts out of having an embryo with Huntington’s Disease could be said to have deprived that child of life and their future right to make decisions because of their disease.)

If PGD were to be unrestricted, it is a possibility that parents could still opt to implant an embryo with an adult onset disease. Although this may seem as if it aligns with the goals the open future argument sets for having greater opportunities for children, those who advocate for the restriction of PGD for adult onset diseases (and use the open future argument as part of their reasoning) say that by deliberately implanting an embryo that has an adult onset disease  or a predisposition to one, parents expose their children to genetic discrimination and thereby limit their range of options (Kopelman 385). This will be discussed further in the “Quality of Life” section of this paper. Critics of the open future argument often argue that children and parents can make life choices that are best tailored to the child’s medical condition if genetic testing is conducted as early on as possible, expanding the range of opportunities for the child ( Kopelman 384). For example, a child who will contract an adult onset disease may pursue a dream career that would peak in their early years, like an athletic career, or make investments that they could set aside for paying for medical treatments later on in life.

Another argument that supports restricting testing for adult onset diseases is that parents will opt out of having children with adult onset diseases, thereby undervaluing the lives of those with them. However, this argument does not take into account the possibility that parents may choose an embryo that will develop an adult onset disease if they feel as if they are both financially and emotionally capable of raising a child who will develop a disease. Parents may either purposefully select this embryo if it has other desirable traits or include it in a random selection if they are open to the possibility of having a child with or with a high susceptibility to an adult onset disease. Essentially, testing itself is not a violation of a child’s autonomy, as parents could still choose an embryo with (a predisposition to) a disease, but purposefully selecting against an embryo that has a high predisposition an adult onset disease to or an existing condition could be considered a violation of the child’s autonomy, according to the future argument. This means that protection of a child’s future autonomy has to be weighed against a parent’s right to autonomy and the burden of care.

Personal Perspective

Personally, I believe that the benefits of being able to plan for the future and ensure that the burden of care on the stakeholders is not unbearable outweighs the concerns raised in the open future argument. Not only would this eliminate financial and emotional stress on parents, allowing them to better care for their children and plan for their lives, but I also agree with the argument that it would ultimately allow for a wider range of options for children. Taking into account the medical condition of a child has a significantly large impact on other choices, like career or financial planning choices, that would not have made logical sense to opt for before. This allows children to be better prepared for their future and pursue their aspirations simultaneously. However, these lifestyle choices can be made without the child being aware of their health condition. This perspective is debated further in the “Informed Consent” section of this paper.

In summary, it is important to discuss under what conditions it is ethical to restrict parental autonomy to protect an unborn child’s future autonomy while making sure the burden of care is not unbearable on the shoulders of parents as stakeholders.

Informed Consent

Ensuring Parents Make Informed Decisions

The next issue that will be discussed in this paper is that of informed consent. Informed consent can be defined as a “process of communication by which patients obtain pertinent medical information about the indications, risks, benefits, and alternatives of the proposed treatment from their health care provider” (McGowan). Using this information, patients then can make informed and voluntary choices to accept or decline the procedure. In the context of this paper, informed consent is mainly discussed along with knowing about the possibility of misdiagnosis, risk factor (susceptibility), the possibility of new treatments being developed in the future, and a range of severity.

Informed consent practices have yet to be standardized. The results of a cross sectional study on IVF clinics which offered PGD in the US and  assessed both patient education and informed consent showed that while 56% of clinics offered counseling and 84% of counselors were professional genetic counselors, only 37% of clinics mandated separate informed consent processes for PGD, meaning that parents would have to set up a time to meet with a counselor before making their decision to go ahead with testing. Even in the clinics that did mandate such a process, 54% incidences of these consultations occurred as a single event prior to implantation treatments (British Medical Journal 2009, Perceptions of Genetic Discrimination Among People at Risk for Huntington’s Disease: a Cross Sectional Survey).

In terms of PGD, informed consent involves talking about both the process involved in obtaining the embryonic cells, the actual testing process, and the limitations of testing, such as specificity and accuracy.There are several factors that, without genetic counseling, parents might not understand when opting to test for adult onset diseases. For example,  testing is not one hundred percent reliable. According to a study conducted by the European Society of Human Reproduction and Embryology PGD Consortium, 24 misdiagnoses occurred from 15,158 cycles. Although this is  a relatively small number, misdiagnosis is still a possibility many who are opposed to unrestricted PGD are concerned with.

Not only is misdiagnosis an issue when making a decision based off of test results, but, as referred to in the “Introduction” section of this paper, many tests often screen for a predisposition to a disease as opposed to a definitive result that shows that one will develop. For example, the BRCA1 and 2 genes indicate predispositions to ovarian and breast cancer, whereas testing for Huntington’s Disease will give a definitive result as to whether or not the condition will present itself. Without appropriate counseling,  parents might misinterpret results of testing and make decisions based off of these misinterpretations.  Additionally, PGD cannot determine the range of severity of a disease; there is no certainty as to what point during the lifespan of the patient the disease will present itself at, how long it will affect that patient before they pass away, or the extent to which the disease will impact their lives.

The idea that parents are simply choosing between two perceived qualities of life is another common misconception. It is impossible to choose the same child without without a disease in this scenario, which might make this an obvious decision. Instead, a parent is making a decision between two completely different embryos, which have different genetic make-ups and will present different physical traits. By opting for an embryo without a disease, parents might unknowingly be undervaluing the life of the child that could be born as a result of the implantation of the other embryo. Unawareness can be problematic, as parents may make decisions based off of misconceptions or lack of knowledge about perceived qualities of life, misdiagnosis, and the range of severity. They might make decisions, most likely against having children with adult-onset diseases (based off of common misconceptions), that they themselves would deem unethical; for example, parents might have chosen an embryo without a disease, thinking that the disease was the only difference between the embryos, whereas if they had been more informed, they would have felt as if the decision they had made undervalued the life of the embryo with the disease or high susceptibility rate. Those who support PGD for adult onset diseases suggest that these concerns be addressed by standardizing informed consent procedures.

Informing Children of Their Health Statuses

Another aspect of the informed consent angle on this issue is the debate as to whether or not a child who will develop an adult onset disease or has a predisposition to one should be informed of their health status or susceptibility. Although this is under the “Informed Consent” section of this paper, it is also strongly tied to the “Quality of Life” section, as it impacts the ways children will live and the decisions they might make. The considerations that are evaluated when trying to determine whether or not this information should be disclosed to the child are very similar to those an adult takes into account when they decide whether or not to receive testing for adult onset diseases.

One reason to withhold this information is that knowing about the disease can put strain on the individual and cause them to make irrational decisions. However, a possible benefit to disclosing such information to a child is the possibility of lifestyle changes and their own planning for treatment. In this way, children will be able to exercise their autonomy incredibly early on- before their disease even develops, or at least have a say in their medical plans. As explained in  the “Parental Autonomy” section of this paper, testing also enables children to make life choices that better fit their medical conditions. However, children who come to be aware of their health status or susceptibility many experience stress if there is no known cure for the disease they have or have a predisposition to.

Personal Perspective

The informed consent angle of this issue was the aspect of this project that I found to be the most convincing in terms of limiting PGD for adult onset diseases. Without standardized informed consent procedures, parents could go on to make a decision they themselves would deem unethical. In terms of the debate as to whether or not to disclose information about the health status or susceptibility to a child, I concluded that a child should be able to opt for testing themselves. Although there would not be a law that would prevent parents from disclosing this information from children, I personally thought that the ethical course of action would be to have parents withhold results of any tests they had conducted. While parents may feel a burden knowing about a condition and keeping it hidden from their child, it is their responsibility to keep this stress away from the child until they are old enough to decide whether or not they wish to know about their health status. While knowing about the disease may help a child to financially prepare for the future, this is a part of the responsibility of the parent until the child is an adult, and lifestyle choices do not necessarily have to be made with the child knowing about their conditions- they can be made with the guidance of parents.

In summary, there are various aspects involved in the informed consent angle of this issue, the main ones being parents’ awareness of the possibility of misdiagnosis, the range of severity, the fact that testing is not always definitive, and the question of whether or not the child is to be informed depending on the impact it will have on their mental state and stress as well as their ability to think about the future.

Quality of Life

Another incredibly prominent concern in this discussion is that for the quality of life of the child. The Oxford English Dictionary defines the quality of life as “the standard of health, comfort, and happiness experienced by an individual or group.” It is something many parents take into account when trying to make a decision that is in the best interest of their child, and parents often feel an obligation to give their child the highest quality of life possible. However, it is important to remember that this decision is extremely complex. When deciding between multiple embryos, as mentioned before, it is not as if you can chose the same child with a higher quality of life- you are making a choice between two people that will have entirely different genetic and physical traits, and the  embryo that is not chosen is highly likely to be discarded or thawed. This would mean that the embryo would never be implanted and that the embryo would never develop and see life outside of the womb.

Varying Perspectives on the Quality Of Life

When discussing the quality of life aspect of this situation, one query that arises is the question as to whether or not the quality of life with an adult-onset disease so low that it is, in some sense, not worth living, or something that parents are obligated to protect their children from. When grappling with such a question, it is important to keep in mind that genetic testing can only obtain information about health status and predisposition, not quality of life, how severe a disease will be, or at what age an adult onset disease will present itself at. Quality of life is an abstract concept of which everyone has a  unique and somewhat subjective perception. This is illustrated in a nonmedical scenario by statistics regarding poverty and happiness. In a 2004-2006 study conducted by Professor Mariano Rojas, those considered “poor” when evaluating household income and dependency on household income did not rank themselves as having “low life satisfaction,” contradicting the common perspective that a raise in income corresponds to a raise in satisfaction and well-being in life. Similarly, the contraction of an adult onset disease does not necessarily entail a lower quality of life.

While it is possible to imagine having an adult-onset disease, it is quite unclear as to whether or not your attitudes would remain the same if you were to actually contract a disease.

Though parents may envision the quality of life with an adult onset disease as low,  the same things that constitute a low quality of life for them may not be the same things that constitute a low quality of life for the child. While a parent might feel that an adult onset disease greatly detracts from the quality of life, a child may be perfectly content with their lives and the life they lead up until the development of their disease. Additionally, there is no guarantee that the child born as a result of the IVF procedure in this scenario will not contract some other disease or suffer from a serious injury. It could be argued that, even though an embryo does not have or have a predisposition to an adult onset disease, their quality of life may still be “low” due to disease or injury, and therefore parents should not take quality of life into account when making their decision as to which embryo to select for implantation.

Surveys and studies have shown that attitudes about life tend to change over time- many experience depression when they are first diagnosed with an adult onset disease, but tend to develop a strong will to live later on in the progression of the disease. Huntington’s Disease serves as an example that illustrates this change of attitude and quality of life. There is a stage of life before and after the disease. Before the disease develops, patients are free from any physical impairment. However, they also have to live with the burden of knowing they have the disease if they are either told by parents who conducted PGD for the disease and selected an embryo with it or have chosen to conduct genetic testing themselves. The quality of life is generally said to get progressively worse after the disease hits. Not only is the burden of knowing that one or one’s child will go through this a concern that greatly impacts the quality of life, but the burden of uncertainty is as well for those who are unaware of their health status or susceptibility.

Uncertainty is not just a concern for the child. Many supporters of PGD for adult-onset diseases argue that allowing parents to use the technology will eliminate any burdens of uncertainty that they might experience while raising a child and being unsure of whether or not that child will develop a disease. While it is true that there will always be some element of uncertainty as parents raise children, allowing for this type of PGD will eliminate these certain burdens and allow for parents to plan financially for the development of their child’s disease. Additionally, most people live perfectly happy, healthy lives free of any atypical suffering before adult-onset diseases hit.

Concerns Regarding Healthcare and Career Discrimination

Those who support PGD for adult onset diseases argue that parents should be able to get testing as to protect their children from not only the pain of an adult onset disease but health care and career discrimination as well. Although the GINA (Genetic Information Nondiscrimination Act) was passed in 2008, a study from 2009 showed that healthcare discrimination has been widely reported by those diagnosed with Huntington’s Disease and had been identified as a source of psychological distress for those surveyed (US News, People with Huntington’s Disease Report Discrimination). In another study, it was found that people who denied testing for BRCA1 and 2 cited fear of discrimination as their reason for doing so (Peterson et. al). In a 2009 survey of Huntington’s Disease patients, participants reported discrimination in employment. This concern about discrimination in employment is highly prevalent, as many parents who pursue testing for adult onset diseases and opt out of having a child with an adult onset disease do so out of fears that their child will have to deal with unnecessary suffering and discrimination.

Personal Perspective

While I agree with the idea that each person has their own particular perspective on the quality of life and that it is impossible to judge the quality of someone else’s life, even in a hypothetical situation, I also believe that concerns about the burden of uncertainty on both the parent and child as well as concerns for discrimination outweigh the concerns about misconceptions of quality of life. While the burden of knowing is also significant, knowing does not necessarily have to be a burden, as discussed in the “Autonomy” section of this paper, but something that enables parents to better plan for the future and opens options to children.

In summary, the quality of life is a somewhat idiosyncratic and abstract concept, and while perception of this concept differs from person to person, many parents have valid concerns about genetic discrimination and limited opportunities for their children.

Conclusion

Overall, I did not see the reasons presented against a free use of PGD for adult onset diseases as strong enough to completely prohibit the use of the technology. While the open future argument does bring up the important concept of a child’s future autonomy and keeping options open for them, it is also important to allow the parents, as stakeholders, to be able to make decisions that allow them to cope with the burden of care and better plan for the future- which would actually allow a greater range of opportunity for the child, as it would lead to different lifestyle and financial choices. The quality of life is a highly philosophical aspect of this project, yet concerns for the burden of knowing and healthcare and career discrimination are highly relevant. However, concerns regarding healthcare and career discrimination can be further eliminated by an even stricter reinforcement of the Genetic Information Nondiscrimination Act.

The informed consent angle further complicated this issue, as there are a wide array of misconceptions that could interfere with truly autonomous and voluntary decision making. In order for these misconceptions to be eliminated, informed consent procedures must be standardized in IVF clinics across the country. Ensuring access to certified genetic counselors and requiring multiple consultations prior to the beginning of the implantation process would allow for parents to come to an informed, educated decision based off of facts and for common misconceptions to be clarified.

In the same way that parents have the right to make autonomous decisions about PGD, children should have the same right to find out about their own health conditions. Parents have the right to awareness of their child’s health status if they want to, and children have the right to be aware of their own health status if they want to. I came to the conclusion that it is only ethically permissible for a parent to disclose information regarding their child’s health status to that child if the child is open to awareness of this information, and  that it was ethical for parents to use PGD to detect adult onset diseases. Ultimately, it is within the scope of a parent’s autonomy to decide what is right for themselves and their children.

Although not within the scope of this project, there are other long term issues that arise while discussing this scenario. If PGD for adult onset diseases is unrestricted, the popular decision may be to select against embryos considered to be unhealthy. This may eventually lead to a slippery slope, resulting in a society in which people with adult onset diseases, disabilities, or other traits parents may be likely to select against are never born.  While the elimination of disability and disease could be viewed as a boon to society, it is essential to remember that the same people cannot be born without a disease or disability. Instead, these people would never have had the opportunity at life, simply because parents  perceived their quality of life as lesser and believed that they were giving the same child a chance at a greater quality of life. Additionally, this could very well send the message that life with disability or disease is not worth living to those who live with these conditions today. This message could be extremely dangerous, as it might lead to further discrimination against these people.

Another possibility is that those of lower socioeconomic status may not have access to technology or quality counseling, in which case the government and insurance providers would have to decide if these services should be provided for every prospective parent who may need access to them. Despite the fact that these were not discussed in this particular project, these are both important factors in answering the complicated question- “Is it your right to decide what is right?”

By Veda Kumar

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