Research Ethics - HGH

There is argument around NIH’s synthetic hormone trials, where normal children of short stature and children of deficient in growth hormone are concerned. The question at hand is that if it is the case that is short stature is a deleterious condition, then who is to say that children not hormone-deficient should be denied the therapies available to those who are just as short and are hormone-deficient. The goal of this paper is to examine both sides—the side that claims that non-hormone-deficient children should be allowed to obtain treatment and the side that says that these children should not—and then compare them. It will be the stance in this paper that it would be highly unethical to exclude children of short stature from research that could lead to the improvement of their situation, be it because they are naturally extremely short or because of an actual deficiency.

It may seem odd to think of short stature as a disease. That is because most people have never seen shortness in the most extreme of cases. In these such cases, it can be considered a handicap and a physical abnormality because it have hinder the extent to which one could physically deal with day-to-day activities. Short stature may even have psychological effects, stemming from factors such as teasing and self-esteem. Short stature may also lead to increased economical problems. For these reasons, many parents will try to obtain readily available, or at least more widely available, synthetic growth hormones. This is the case, whether or not the child actually has a hormone deficiency.

Detecting hormone deficiency is itself is very difficult. Endocrinologists, the ones who are to deal with these kinds of problems, have an arsenal of tests at their disposal to test how much of the natural growth hormone is present, but these tests are sometimes inconclusive because children may be diagnosed as non-deficient, when in reality, the may be. Again, the question being raised is as follows: why should growth enhancing growth hormone be denied to children who are simply very short, especially when the possible consequences for non-treatment are the same? Also, if diagnostic tests are unable to distinguish between the two groups, then should not both groups have access to treatment so as not to exclude anyone who has a rightful claim to it? The issue for non-deficient children is that the growth hormone treatments may not actually be efficacious—it is unclear whether hormone treatment actually increases their height, or just makes them grow to the same height they might have reached, albeit at a faster pace—and that their safety cannot be accounted for.

So if hGH is to be tested, why should it not be tested on normal children? There are a few arguments against this testing, And they generally beg one to ask moral questions before appealing to research questions; the assumption is, of course, that if one were to ask moral questions, that one would instantly see why such research should not be allowed. The most compelling argument is what this paper will call the ‘cosmetic theory.’ This position is based on a moral argument around the use of hGH in general. There are many who are afraid that hGH may be used by normal children simply for cosmetic reasons. Such abuse should not be allowed especially when there are limited resources. If normal children are being treated, then they are detracting resources away from those children who are actually hormone deficient for purely superficial reasons. By excluding normal children of all heights, the piece of the pie available to those children who are actually deficient becomes larger. Also this treatment seems to negate the effect of treatment on deficient children, on account that they are getting taller, but with other normal-height non-deficient children getting taller as well, no benefit is made. These arguments may, however, be argued against by a simple appeal to some ambiguities and to moral claims of justice.

The ‘limited resources’ argument is much more compelling though, when it is teased apart from the ‘cosmetic argument.’ It avoids some of the pitfalls of the latter. For example, one weakness of the cosmetic argument is the claim that normal children who are non-deficient in growth hormone act on purely cosmetic impulses. In any such event, children who are non-deficient are expect the same results as deficient children, an improved physical state which also may improve the psychological state, thus deficient children are equally as guilty of superficiality as non-deficient children. Secondly, given that it is in fact a cosmetic change, another large assumption of the cosmetic view is that all normal children of all heights will try to use treatments for cosmetic reasons. This benefit for others, besides those on whom hGH is being tested, is only secondary. The primary moral focus is on children of short stature. It may be the case that other children who are of normal height may benefit, but that is beside the point. The pure limited resources point of view will maintain that children of normal stature, because they have no moral claim on hGH (since they already have it naturally) have no right to take away the pie from those who do not have enough naturally occurring hGH in their bodies, based on the limited resources available. Such a view may even ‘let’ normal children take advantage of such treatments, but only after hGH-deficient children have been given their lot.

One of the arguments in favor of testing of such treatments on normal children of short stature is that hGH already prescribed to a vast number of normal children. The extent to which it may be used is likely to increase too, since the creation of synthetic hGH will quite possibly lead to greater availability on account of cost. If the safety and efficacy of hGH is not known for normal populations, then the clinicians are unaware of any serious risks to the use of these hormones. As such, the NIH felt it was its duty to test these treatments on normal children, so that clinicians are better equipped to inform the general population of the risks and are, themselves, informed of the consequences of its use in the normal population.

Besides this, it is also thought that this research could influence the public argument over the use of hGH, in response to the ‘cosmetic argument’ Illustrated above. The data would not only be useful for normal children of small stature, but also for normal children of normal stature, some of whom may want to be taller in order to be a better candidate for sports, for the cosmetic appeal of being taller. Before any of the ethical dilemmas are discussed though, it is the opinion of many that the research should be finished. After all, what point is there in arguing over the use of hGH for cosmetic purposes in normal children if it proves to have deleterious effect?

Another argument in favor of this testing is that endocrinologists would have a vested interest in this type of research. This, however, is a poor reason. One groups’ interest in a question does not validate research. After all, if that were the case, then Nazis could not be attacked for methods of torture, which asked questions such as how expedient different methods of killing were.

Lastly, the last argument in favor of this research is that, as stated earlier, that because both groups of children suffer the same physical and psychological constraints, that it would be unjust to deny them treatment on account of an already ambiguous definition of what a growth hormone deficiency is. In fact, it does seem unfair based on the outcomes of adopting the opposing theory, that normal children of short stature should not receive treatment. In such a case, it then seems permissible that hormone deficient children get taller, while short children are forced to stay short. So, then it is short, normal children who are forced to accept the consequences of small stature; they are still physically hindered and psychologically stigmatized. It does not seem right that only one group should benefit from treatment. After all, if no one is forced to be short, would that not also make everyone potentially better off? Injustice is diminished by killing two birds with one stone. Also, because of synthetic growth hormone, it is doubtful that the pie will be too greatly diminished by normal children.

This paper explored some of the arguments against testing hGH on children who are not hGH-deficient, but of small stature. Of them, only one was truly, compelling, that normal children have no claim to hGH and that to let them, would mean to fail to give that treatment to deficient children. Also, because no one is sure of the efficacy on normal children, then it is wrong to squander those resources on children who may not be benefiting at all. This point of efficacy can also be taken to say that normal children should be tested on, since there are normal children currently on these treatments. There are questions about the effect on normal children, whose parents may not be cognizant of the consequences of these treatments. Moreover, normal children of short stature suffer from the same maladies as children who are hGH deficient, therefore, justice implies that they actually do have a moral claim on access to these treatments. The claim in this paper was just this. It is the goal of research to improve thehuman condition. However, it seems contradictory to say that researchers should only help one subset of afflicted individuals and exclude another group, especially when the treatments available may possibly help them as well. To do so would be to say that testing a procedure for a certain set of cardiac patients is fine, but that other cardiac patients, on the basis of a difference in the origin of their plight, should continue to suffer, while this procedure could aid both groups. Clearly, that is wrong, and so is the exclusion of short, normal children from growth hormone studies.