Thursday, July 17, 2008

Alternative to the Treatment-Enhancement Distinction

In the advent of genetic screening and genetic engineering, important ethical questions are being raised. We now have the technology to screen fetuses for genetic abnormalities and provide information to couples who would rather abort disabled fetuses or consider medical treatment. We have methods for screening for Down syndrome, Spina bifida, Tay-sachs and many other serious diseases. In contrast, we also have technologies that allow us to enhance children through genetic/medical means. In the near future we will have the technology to choose not only the sex of our children but also their height, IQ, their psychological profile, their life expectancy and other highly desirable qualities. We will essentially determine the genetic future of a human being. A life predetermined by our technology. The film Gattaca depicts in heroic form the possibilities:


The question becomes - should we use medical technology (e.g. genetic screening) for treatment purposes only, or also for enhancement purposes? If we use it for both purposes, where should we draw the line? One reasonable answer that people often give is, “We should us genetic screening for serious disabilities and use enhancements only for moderate purposes so that it does not place people who don’t have access to such technology at a disadvantage.” If you have seen the movie Gattaca, you will understand the ethical dilemma – people will pursue enhancements to such degree that defining what becomes an enhancement is difficult, it is arbitrary and open to disagreements. This is the essence of the treatment-enhancement distinction - it attempts to draw a line between interventions meant to prevent/cure conditions that we view as diseases/disabilities, and interventions that improve a condition that we view as a normal function or feature of members of our species.

So the treatment-enhancement distinction attempts to draw a line between using genetic screening for treatment purposes, and using screening for enhancements. However, the distinction creates ethical dilemmas because the line is non-exact or blurry; it is difficult to specify exactly what constitutes a treatment or an enhancement. To better explain why screening is acceptable in some cases but not others, I argue that the line should be drawn according to a moral principle that most people would share: individuals have the right to live long, pleasurable lives with the capacity to avoid pain or suffering. I call it the freedom of pain principle.
This moral principle should first be justified in light of popular opinion. Most would agree that pleasure is a fundamental feeling that contributes to positive life experiences and improves quality of life, and that we all should have the right to pursue a high quality life. Even though pleasure may seem difficult to operationally define, it encompasses feelings of joy and can become a source of happiness. Pleasure can be felt in physical or psychology forms as in the case of an orgasm or emotional relief, both of which can be viewed as positive life experiences. Arguably, individuals may experience pleasure from pain, like in the case of sadism, but it is intuitively rational to think of pleasure as the opposite of suffering. Alternatively, possessing the ability to avoid suffering allots an individual the means for increasing pleasure by minimizing pain, thereby improving quality of life. The importance of this moral principle can be noticed in societies where citizens condemn forms of cruel and unusual punishment for prisoners, even in cases where criminals have committed violent crimes. These societies believe suffering is undesirable and should be minimized if possible. I dare say, the right to feel pleasure and avoid pain can be viewed not only as a right, but also as a value because it is a desirable quality and is generally held in high regard. 

The freedom of pain principle can be used to rationalize why screening should be permissible in limited cases. Glover presents a compelling case where a married couple gave birth to a baby girl with Epidermolysis Bullosa (EB), and subsequently discovered that future pregnancies would run a 25% risk of a similar outcome [1]. EB is a rare and painful genetic disorder that has no definitive cure other than prevention through screening. People born with EB lack the anchoring junctions (desmosomes) that hold the layers of skin together, as a result, any rubbing or pressure causes painful sores likened to second degree sores. Some forms of EB are mutilating over time. The purpose of discussing EB is to point out that a child with EB has a limited capacity to avoid pain because the disease progressively becomes worse until death. For this reason, Glover labels EB as a disastrous disability and distinguishes it from other moderately severe disabilities [2]. These parents had to “watch [their] child die slowly and painfully [2].” This principle provides a persuasive argument for choosing to bring into the world a normal child rather than one with EB – the reason being that dying a slow and painful life conflicts with the freedom of pain principle. Herein, genetic screening is permissible.
Likewise, the principle can be used to rationalize why screening is not permissible in other particular cases. Take for instance a case where parents might want to use genetic screening to screen against forms of severe depression. The future holds amazing biomedical breakthroughs where the markers for depression might be well understood and provide ‘solutions’ for undesired traits or predispositions. Parents could argue that depression has been linked to somatic and psychological pain – people with severe depression often wish they had never been born. Why would potential parents want to conceive a child who would experience such distress? Nevertheless, many forms of depression are readily treatable with cognitive-behavioral and medical interventions. With such measures, psychosomatic pain can be avoided without genetic screening. With help the pain can be minimized substantially with a potential cure. More importantly, the capacity to derive pleasure from life can be restored. This can be seen in patients who have successfully lived long, happy and productive lives despite having been diagnosed with depression at some point in their lives. The famous actress Brooke Shields battled with postpartum depression; experiencing severe depression, thoughts of suicide, delayed maternal bonding, and an inability to respond to her baby's needs. Despite her struggle, she overcame the challenge and became a celebrity success story. This is one of many successful accounts in which, if genetic screening had been performed, their success would have been impossible- they would not have existed to overcome such challenge! For this reason, if we endeavor to protect future human life from being subjected to a terrible quality of life, we need to ensure that the link between predictable genetic conditions and negative life experience is unambiguous [13]. The depression case is simply not predictable enough and shows that the freedom of pain principle can be upheld.

Cases of EB violate the freedom of pain principle and thus should be subject to genetic screening. The freedom of pain principle accounts for why people intuitively feel that people with severe forms of painful disabilities are likely to experience a lower quality of life as opposed to someone otherwise healthy. Arguably, an individual who suffers constant pain is likely to suffer more in comparison to someone who possesses the ability to avoid similar pain. For instance, someone suffering from arthritis is likely to avoid pain by avoiding activities that are likely to cause excessive joint movement. But someone with EB has very limited means of avoiding the pain. The skin is likely to tare in places where placing protective barriers like dressings to avoid scraping or scarring is impossible. Structures, such as the inner lining of the digestive tract and other deep tissue layers, are likely to blister and protecting these structures is virtually impossible. Sufferers of EB have even compared the sores to third-degree burns [3]. In view of the fact that someone with arthritis can seek effective medical interventions to avoid the pain (e.g. taking mild pain medication) without serious side effect and the EB patient cannot, the EB patient’s moral principle is violated, and the only effective intervention available is to avoid the pain through prevention -- genetic screening. I should emphasize, only extreme cases (like EB) should be screened. In these cases the capacity to avoid pain is virtually impossible. There is no cure, no effective treatment, no hope, and the pleasure potential is extremely limited.

An argument against using the treatment-enhancement distinction is that drawing the boundary can seem arbitrary because defining exactly what entails a treatment or an enhancement can be problematic. The freedom of pain principle avoids the problem of arbitrariness. For example, Buchannan et al. presents a case where Johnny and Billy are potential candidates for growth hormone (GH) treatment due to their limited projected height of 5 feet 3 inches [4]. Without treatment, both candidates would suffer disadvantage equally despite their different etiologies (Johnnie’s being a brain tumor affecting normal growth hormone secretions and Billy’s being pure genotype). It is important to note that neither Billy nor Johnny could be blamed for their height because their heights were the result of the “natural lottery” [4]. Moreover, their desire to be taller was based on a social prejudice that exists in their surroundings which discriminately favors males taller than 5 feet 3 inches. This is precisely why its considered a disadvantage. So why should one consider Billie’s therapy with GH as an enhancement and Johnnie’s as a treatment? After all, the outcome is the same for both cases. Clearly, the distinction creates controversy and suggests that choosing a line is arbitrary or socially defined. Using the freedom of pain principle can resolve the problem by directing the debate’s attention to whether a violation of their right to live pleasurable lives and their capacity to avoid pain is occurring. This principle provides a non-arbitrary method of looking at the question, and then opens a forum to discuss if the social stigma of being short constitutes a form of pain or hindrance in attaining pleasure. 

The freedom of pain principle is useful in that it acknowledges that there are forms of disabilities that should not be screened, and as a result, it can draw a clear line even when two disabilities negatively affect the quality of life. The determining factor should be whether the right to live a pleasurable life or avoid pain is violated. Glover’s narrative of The Woman, one who suffered from Spina Bifida and managed to live a pleasurable life despite her disability, shows how a disorder that can potentially dampen the quality of life should not be genetically screened in lieu of the odds [2]. In her case, she still possessed the ability to feel pleasure by living a successful life where she obtained a university degree, got married and conceived two healthy children [2]. Simply screening against Spina Bifida or other similar disorders could lead to aborting a fetus whose freedom of pain principle can still be upheld. Is it reasonable to assume, definitively, that someone with Spina Bifida has no chance at living a pleasurable life or no capacity to avoid pain? The Woman defended her right to be alive and stated before a court, “Thank God this ‘abnormal’ fetus was conceived in 1947,” in referring to herself [2]. Consequently, the freedom of pain principle can vindicate in cases where the right appears to be violated. I must admit, the principle appears to be violated – it is easy to assume that a disability like Spina bifida would severely dampen the quality of life by causing excessive pain and limiting pleasure. In spite of this, The Woman proves otherwise. The freedom of pain principle is not violated.

A potential objection against using genetic screening even in cases of disastrous disabilities (e.g. EB) is that we display arrogance by assuming the role of God [5]. Since God is all knowing and all powerful, He should be the one to decide who is to be born or not. Who are we to decide who to abort or enhance using genetic data? Furthermore, who are we to decide the value of another person’s life by choosing who gets to be born? Yet another direct objection is that screening programs send a subtle and disturbing message - that it would be better if severely disabled persons would never be born [5]. This subtle message engenders a form of discrimination against disabled people in general. In fact, moves to weed out "unacceptable" embryos have been described as the "Nazification" of medicine by leading medical experts. Glover states that such screening could endanger the equality of respect for disabled people and reinforce negative attitudes towards them [6]. Similarly, Kaplan would argue that such screening would be sending a negative message to the disabled community already present in our society. This is evident in the deaf community, which has actively challenged the medical community in its efforts to use cochlear implants for deaf children. All of these are reasonable objections.

I have suggested that cases of depression do not violate the freedom of pain principle and thus should not be subject to genetic screening. However, there are objections to this premise as well. The potential parent, for example, could argue that depression causes severe pain (somatic and psychological) and such suffering would significantly decrease a child’s quality of life. For example, one notable symptom of severe depression is anhedonia- the inability to derive pleasure from life. The general loss of ability to feel pleasure is clearly violating the freedom of pain principle and would suggest a case much similar to EB. Furthermore, depression can become so severe that sufferers may commit suicide. In fact, most people who commit suicide have a diagnosable mental disorder like depression [7]. Although one could argue whether depression itself is the cause of suicide, the notion that depression would cause so much distress that sufferers would opt for suicide, is alarming and suggests a critical lack of pleasure or significant amount of pain. This is an apparent violation of the freedom of pain principle and would render support for allowing genetic screening in cases of depression.

In the case of Billy and Johnny, does living in a society that is biased against males who are shorter than 5 feet 3 inches create a significant amount of pain or inability to feel pleasure? Their parents may argue that happiness in intricately tied with society’s attitude towards us. This idea is congruent with Kaplan’s argument that in many cultures there is a traditional belief that the existence of a disability is an overall negative trait [8]. A society that places more value to a taller male could place Billy and Johnny at a disfavor when pursuing particular goals, a life partner, or general acceptance into a community, and as a result, lead to significant psychological distress. The capacity to avoid the stigma is hampered by the constant negative public perception of being short. This distress could hypothetically lead to depression or psychological pain. As a result, the objection raised is that such psychological pain would violate the freedom of pain principle, and can be avoided with genetic screening.

Now I aim to defend the freedom of pain principle despite the objections I raised against it. One of the objections raised against using the freedom of pain principle is that we display a form of arrogance by essentially playing God. However, in the EB case, the prospective parents do not have the slightest sense of arrogance or desire to play God [9]. They are genuinely concerned over the welfare and quality of life of a potential human being. Additionally, the idea that one is playing God through genetic screening evades the fact that ordinary couples are making ‘Godlike’ decisions everyday when they choose to have a child or not [9]. For this reason, the playing God objection is invalid. In regards to the equality of respect objection, Glover argues that equality of respect is actually compatible with screening - one can be a proponent of genetic screening and still insist that the rights of the disabled community be respected. It is possible that someone "better" (e.g. healthier) than the EB girl could have been conceived by the couple, but recognizing this does not necessarily suggest that one feels “contempt or condensation towards him or her” [10]. Any parent would prefer to conceive a normal healthy child rather than one with EB, but this does not suggest we respect the latter more than the former. We simply have a preference for the good of the child.

The freedom of pain principle can also be upheld in the case of depression and as a result, genetic screening for depression should not be allowed. The objections previously mentioned in favor of allowing genetic screening for depression centered on the idea that depression can lead to psychosomatic forms of pain and potentially limit an individual’s capacity to feel pleasure. However, depression is mitigated not only by genetic makeup but also by environmental factors. For this reason, relying solely on genetic screening as a form of preventing pain is not sufficient. Furthermore, one can propose Glover’s compromise policy to help differentiate between disastrous disability (e.g. EB) and moderate or mild disabilities (e.g. depression). The disastrous disability would create much greater pain and hindrance for pleasure than a moderate to mild disability. Another important aspect to consider is that people in general are prone to feeling variant forms of depression. When people face personal difficulties, there is a natural tendency to feel depressed. It is a natural propensity that can be overcome through our natural gifts of will power and determination. According to Sandel, the moral status of nature is important [11]. Thus, performing genetic screening to remove the natural tendency to feel depressed would undermine the “giftedness” of life [12]. The giftedness of life puts forward the notion that despite our efforts, we are not completely responsible for our endowments because our powers and accomplishment are a gift. As such, our ability to naturally overcome forms of depression is also a natural (e.g. genetic) gift and enhancing or screening against depression would undermine such gifts – our will power and determination. Even while there are natural cases of depression that can be overcome by sheer spirit, there are severe forms of depression that may require professional help. But even in such severe cases, medical intervention and not genetic screening can help uphold the freedom of pain principle by providing therapy that will minimize pain and aid in enhancing quality of life. Simply screening against depression would be a quick solution to the problem, but at the expense of loosing the giftedness of life. That is a hard price that should raise brows.

Despite the objections I posed against the freedom of pain principle, the principle helps clarify, to some extent, when genetic screening is permissible, without relying on the conflict-ridden treatment-enhancement distinction. It helps provide a non-arbitrary line between enhancement and distinction. Although the objections are reasonable, the freedom of pain principle can address each by placing the emphasis on pleasure potential and the capacity to avoid pain.

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References
[1]. Glover, Future People, Disability, and Screening, Pg. 431. [2] Glover, Future People, Disability, and Screening, Pg. 432-433. [3] O'Brien, M.D. of Colombia University < http://en.wikipedia.org/wiki/Epidermolysis_Bullosa>. [4] Buchannan et al., From Change to Choice. Pg. 115. [5] Glover, Future People, Disability, and Screening, Pg. 434. [6] Glover, Future People, Disability, and Screening, Pg. 435. [7] Louise B Andrew, MD, JD, Apr 10, 2008 <http://www.emedicine.com/EMERG/topic129.htm>. [8] Kaplan, Prenatal Screening and its Impact on Persons with Disabilities, Pg. 131. [9] Glover, Future People, Disability, and Screening, Pg. 434, . [10] Glover, Future People, Disability, and Screening, Pg. 435, . [11] Sandel, The Case Against Perfection: What’s wrog with designer children, bionic Athletes and genetic engineering, Pg. 51 April. [12] Sandel, The Case Against Perfection: What’s wrog with designer children, bionic Athletes and genetic engineering, Pg. 57.[13] Kaplan, Prenatal Screening and its Impact on Persons with Disabilities, Pg 135

3 comments:

Anonymous said...

Your insight into this issue amazes me. I've never really thought on this so greatly. Thanks for opening my eyes.

-UC pre med (the person that you helped on SDN)

devseo said...

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shashank said...

Here is a link to more information about the genetics of Psychological Impact of Genetic Testing that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Psychological_Impact_of_Genetic_Testing/317. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA