In her book Genetic Dilemmas, Dena Davis analyzes the balance between parental autonomy and future child autonomy in several different scenarios involving the use of genetic technology.  Her aim is to convince the reader that parents should be limited in the choices they are able to make for their children: in short, parents ought not to make decisions which might restrict the child’s future rights and ability to become a completely autonomous adult[1].  Specifically, I will examine Davis’ application of the right to an open future argument to human cloning and testing for late-onset genetic diseases in children.  In these two cases, her application of the argument leads to conflicting outcomes, specifically concerning the moral permissibility of parents knowing details of their children’s genetic makeup.  I will argue that this inconsistency is unacceptable, and we therefore must revise Davis’ proposed standards for cloning and testing for late-onset genetic diseases to resolve the inconsistency.

Before I can take a closer look at Davis’ application to specific cases, I must first explain more clearly what she means by a child’s right to an open future.  The right to an open future argument states generally that parents should endeavor not to make choices for their children (or future children) that might “deliberately to substantively” restrict the children’s future options or liberties[2].  What Davis generally means is that parents should not deliberately make decisions that would result in permanent or irrevocable limits to the child’s future options. According to Davis, a child should be free to make decisions in adulthood concerning things such as career, religion, and marriage, among others, and any decision made by the parents which would deliberately limit these “momentous pieces”[3] of the child’s adult life would be seen as a violation of the child’s right to an open future.  Davis often focuses on the intentions and the deliberateness of the parents or parents-to-be in her application of the right to an open future argument.  For example, if two people decide to have a child together and happen to have a disabled child, whose future options are limited by the very nature of the child’s disability, Davis sees no problem in this[4].Where she draws the line is if two people take deliberate steps to ensure they have a child with a specific trait, whether that trait is anything from gender to a disability.  Not only would the selection of a specific trait limit the options available to the child in the future permanently and irrevocably, the parents would have acted deliberately.

In her discussion of human cloning, Davis has chosen to focus exclusively on a method called somatic cell nuclear transfer.  In this process, a somatic cell (which is any cell in a person’s body other than sperm or eggs)[5] is taken from a donor, and the genetic material (DNA) is removed.  This DNA is then placed in an enucleated human egg cell, which is just an egg cell lacking a nucleus.  The egg cell is then, in theory, capable of growing into an entirely new person, who is genetically identical to the donor person[6].

The following two examples summarize Davis’ application of the right to an open future argument to cloning.  For the first example, let’s assume there are two individuals who wish to make use of cloning for the purpose of duplicating another already-existing person.  They obtain the DNA from the donor and it is inserted into an enucleated egg.  Nine months later, the genetic clone is born.  In this case, the parents have taken deliberate actions to guarantee they have a child with a specific genetic makeup, and will presumably treat the child with bias based on the child’s genetic makeup.  Specifically, let’s assume this child was cloned from a professional basketball player.  The parents might be very inclined to encourage or even force their child to play basketball, in the hopes that the child achieves the same level of skill as the donor.  In this case, the parents are deliberately attempting to limit the child’s right to an open future, particularly the child’s future career choices, as a result of their knowledge of the child’s genetic makeup.  The parents might end up end up forcing the child into a future in which the child is not truly happy, based on their preconceived ideas of what the child should be.  The child who was cloned from the basketball player might really love to play the piano, but his parents might choose not to enroll him in piano lessons and instead buy him a basketball hoop and ball.  After all, the parents who have cloned the child from the basketball player have made an enormous financial investment, presumably in hopes that their child would reach the same level of skill as the donor.  As such, this would be a violation of the child’s right to an open future and therefore morally impermissible.

For the second example, let’s assume that a lesbian couple desires to make use of cloning in order to produce a biologically related child.  One partner could donate the DNA and the other could donate the egg, which would result in a child that had biological input from both parents[7].  Davis views this situation differently than the previous, because the parents are operating simply under the desire to have a child in general, and are not attempting to have a specific child[8].  Therefore, Davis feels it is less likely that the couple in this example would oppress their child based on their knowledge of the child’s genetics.

The preceding examples illustrate the two primary motivations for cloning, according to Davis.  The first example depicted a duplicative motivation.  This would entail a person wishing to make use of cloning for the purpose of duplicating someone else[9].  Davis’ concern is that if parents choose to clone for duplicative reasons, then it is almost inevitable that the parents will mistakenly assume the clone to be just like the donor in every way, and will pressure the child into certain life choices based on the donor.  Because the parents have made such a large financial investment in guaranteeing they have a child with certain traits (e.g. height), they might feel somewhat of a sense of entitlement to have a child that plays basketball, like the donor.  There is potential, perhaps a predisposition, for a blatant disregard for the child’s individuality and preferences.  This would be a gross violation of the child’s right to an open future[10].  In the example given above, the parents would be foreclosing upon the child’s future career choices by forcing the child into basketball.  The second example illustrated what Davis calls the logistical motivation for cloning.  Because cloning is the only available option for this couple to biologically reproduce, Davis is more willing to accept the parents’ inevitable knowledge of the child’s genetics because she doesn’t feel that in this case the parents will be oppressive toward their child based on this knowledge[11].  She also concludes that because we readily help many couples who would otherwise be incapable of reproduction, through methods such as in vitro fertilization, that cloning for logistical purposes could be morally acceptable.  She believes that since the parents are not cloning for duplicative purposes, they will be less likely to infringe on the child’s right to an open future by mistakenly pressuring the child into following in the path of the donor[12].

Davis then applies the same fundamental concepts of the right to an open future argument to testing for late-onset genetic diseases.  There are certain genetic diseases, such as Huntington’s disease, for which symptoms don’t typically appear until later in life.  However, disease status and disease carrier status (in the case of recessive diseases) can be determined early in life by a simple genetic test.  Davis argues that it is not in a child’s best interest to pursue testing for late-onset genetic diseases or even disease carrier status, as it has the potential to significantly limit the child’s right to an open future.  For instance, knowledge of disease status may cause a variety of problems including depression, difficulty obtaining insurance coverage, and difficulty in finding employment[13].  If a person is known to possess the gene for Huntington’s disease, insurance companies may be reluctant to offer him coverage, or even exclude him from coverage based on some pre-existing condition clause.   Employers, should they become aware of his Huntington’s status, may refuse to offer him a job, knowing that in a few years, he may become incapacitated as a result of the disease.  There is also the potential for a profound impact on self-image, and deep depression may result[14].  He may live his life knowing that he is at risk, but a positive test confirms his worst fears.  Most people surely would not seek out a prediction of when they are going to die, but testing for a late-onset genetic disease is essentially tantamount to a prediction of a premature death.  Knowing that he may die relatively early in his adult life may influence the types of decisions he makes in his life and he may live recklessly, feeling that he has nothing to lose.   Additionally, he may observe himself constantly, in fear and anticipation of the onset of symptoms[15], causing him much unproductive worry and gridolescence, when he can then make the decision for himself whether or not he wishes to be tested.  Despite the wide availability of testing, Davis cites that only about fifteen percent of adults choose to avail themselves of it[16].  Davis also has concerns regarding confidentiality; she believes that a child’s disease or disease carrier.  The knowledge has the potential to limit his future in terms of career, reproductive, and marriage partner choices, as well as his future access to healthcare.

Davis believes that testing should be delayed until the child reaches adulthood, or at the very least her status should be protected, in case the child wishes to handle that information in a way that may not be in line with her parents’ belief system once she has reached adulthood[17].  Let’s say, for example, a child is tested and found to be the carrier of a recessive genetic disease.  Her parents may feel that she should take care to marry someone who is not a carrier of the same disease, so that she is guaranteed not to have a child afflicted by the disease.  However, when she becomes an adult, she may fall in love with someone who incidentally happens to be a carrier of the same disease, and may wish to marry him, despite her parents’ beliefs.  If her parents know of her disease carrier status, they will be inclined to pressure her into not marrying this specific person; however, if her parents do not know her disease carrier status, she would be free to marry whomever she chooses.  While some parents may only wish to offer advice to her, other parents may attempt to intervene and prevent her from marrying the person she chooses.  In this case, the parents’ knowledge of her disease carrier status has the potential to significantly limit her right to an open future.  By identifying the child as a carrier for a specific disease, the parents may unwittingly carve out the child’s future path, with little to no input from the child herself.  She may also suffer from problems with her self-image as a result of the knowledge and potential stigma associated with the condition itself.

My fundamental objection in these two applications of the right to an open future argument lies in the inconsistency in whether it is morally permissible for parents to know intimate details of their child’s genetic makeup.  In the case of testing for late-onset genetic diseases, Davis argues that the child’s genetics should be held in confidence, allowing the child the freedom to make choices for herself based on her genetic information once she reaches adulthood[18].  She feels that if the parents know details about their child’s genetics, they will be more likely to pressure the child into certain decisions.  However, in the case of human cloning, Davis’ acceptance of logistical cloning implies that it is alright for the parents to know the intimate details of their child’s genetic makeup as long as it is the only option available to the parents for biological reproduction.  Since both testing for late-onset genetic diseases and cloning involve knowing details of the child’s genetic makeup, both have the potential to result in very similar consequences for the child in question.  I argue that if we must conclude that it is morally impermissible to know the child’s genetics for the sake of diagnosis, we must also conclude that it is morally impermissible to know the child’s genetics for the sake of biological reproduction.  In either case, the parents may not intentionally use their knowledge for the purpose of restricting their child’s future options, but there is a good possibility they do so unintentionally.  We can’t say that all parents who undergo genetic cloning for the purpose of biological reproduction will not use the knowledge of their child’s genetics to limit the child’s future options.  We also can’t say that all parents who subject their child to testing for late-onset genetic diseases will use the knowledge to limit their child’s future options.

To clarify the inconsistency in Davis’ argument further, consider the following example.  Say that two prospective parents who wish to use cloning to reproduce are carriers of a specific disease, let’s assume Tay-Sachs.  In order to create a child that is biologically related to them, one of them will have to provide the donor DNA, which means the child would also become a carrier of Tay-Sachs, a fact of which the parents would be fully aware.  In the case where the child is known to be a carrier of Tay-Sachs because he was cloned from his carrier father, or in the case where a child conceived via sexual reproduction was tested and found to be a carrier of Tay-Sachs, the result is the same.  In both cases, the parents know the child’s carrier status, and the child may no longer be free to make decisions for himself, such as choosing a marriage partner, based on his carrier status in adulthood, without being subjected to pressures from his parents based on their belief system.  While his parents may feel he should actively avoid marrying a woman who also carries the gene for Tay-Sachs, he may wish to marry such a woman.  He may experience a great deal of depression when faced with his parents’ rejection of his choice in marriage partner.  Knowledge of disease carrier status may also cause his insurance company to raise his premiums, in anticipation of the possibility of him conceiving offspring affected by the disease.  This example illustrates the point that a child cloned from a person who carries the gene for a genetic disease faces many of the same problems as the child who learns of his disease status from a test: depression, difficulty obtaining insurance coverage, and limitations in his choice of a spouse, or the decision to reproduce.

In response to this, Davis could argue that although the consequences may be similar for both children, the moral difference between the two may be defined by the deliberateness of parents’ actions in obtaining the information about their child’s genetics.  The right to an open future argument weighs the deliberateness of the parents’ actions heavily.  In the case of testing for late-onset genetic diseases, the parents deliberately seek information about their child’s genetics.  In the case of logistical cloning, the parents do not deliberately seek information about their child’s genetics; they seek only to biologically reproduce in the absence of any other options.  Parents who do not deliberately seek this information will likely be less inclined to use the information to pressure their child into making certain decisions, for instance, concerning marriage and reproduction, or any variety of other things.  For example, a couple wishing to make use of cloning for the purpose of having a child will be less concerned with the genetics of the child, and more preoccupied with simply having a child in the first place.  However, the parents who seek their child’s genetic information deliberately do so presumably in order to make decisions about their child’s future; there is really no other reason for seeking this information.  Parents who seek to have their child tested for a late-onset genetic disease do so specifically for the purpose of either making decisions for their child, or for pressuring their child into making certain decisions for himself once he has reached adulthood.  For example, the parents who have their child tested for Huntington’s disease may do so with the intention of discouraging the child from reproducing in adulthood and running the risk of passing on the disease.

This subtle distinction supports Davis’ initial application of the right to an open future argument to both of these cases, and is consistent with her original definition of the right to an open future argument.  However, if in both cases the child’s future rights have the potential to be equally limited as a result of the parental knowledge, and our primary focus remains the preservation of the child’s future rights, then I argue that the deliberateness of parents’ actions in obtaining the information is actually irrelevant.  The parents who gain knowledge of their child’s genetic information passively (as a result of cloning) are still just as likely to use that information to pressure the child into certain decisions, as the parents who have obtained the information deliberately through testing. In both cases, the child’s future options are restricted and the consequences are essentially the same.  I am willing to accept Davis’ position that there may be some material benefits to cloning for logistical purposes, but not without acknowledging that there may also be some material benefits to testing for late-onset genetic diseases.  I feel that if we accept that there are certain instances in which logistical cloning may be morally permissible, then perhaps there are also instances in which testing for late-onset genetic diseases may be morally permissible.

What I believe may be in order is a logistical exception to testing for late-onset genetic diseases, much as there is a logistical exception for cloning.  While Davis focuses on only the potential benefit or harm to the child or his future autonomy in testing for late-onset genetic diseases, Sevick et al. argue that one must take into account the pros and cons for the entire family.  They note that there are indeed some important logistical exceptions in which it may be in the family’s best interest for the child to undergo testing.  As an example, they cite the case of a grandparent constructing a will; the grandparent requests knowledge of his grandchildren’s disease status, so that he may appropriate funds accordingly in his will[19].  In this case, the children, if found to be positive for some late-onset genetic disease, would obviously benefit financially by this information, and perhaps receive enough money from their grandfather to pay for the future care they would likely require.

Sevick et al. also make the argument that studies support the idea that openness about disease and risk in families has often led to improved family communication and ability to cope[20].  As an example, they note that children can often intuitively sense when something is wrong, even if the parents attempt to act as though nothing is wrong.  The literature indicates that when parents are open with their child about disease and risk in the family, the child’s anxiety levels are often reduced[21]. Knowledge of disease status in some cases can be a relief to the individual and the family[22].  This relief may come in the form of a negative diagnosis for many, who will not have to spend the majority of their lives in fear of developing symptoms or identifying themselves as “at risk”.

Even Davis acknowledges that for some people who wait until much later in life to be tested, a negative diagnosis can be nearly as devastating as a positive one, simply because they have spent their entire lives identifying themselves as “at risk”, only to find that the worry was over nothing[23].  Sevick et al. point out that early testing prevents people from building their identities around the idea of being “at risk”[24].  For those who receive a positive diagnosis, they will have adequate time to plan for their future care.  Further, in the case of Huntington’s, some variants of the disease are early-onset and can begin to show symptoms in childhood.  Sevick et al. note in the case of early-onset variants, testing the child for Huntington’s would actually be beneficial for planning the care the child will likely require before he reaches adulthood[25].

In order to implement an exception in testing for late-onset genetic diseases, we would need a principled way to determine who would qualify for such exceptions.  It is important to acknowledge, as Sevick et al. do, that not every child will be psychologically prepared to deal with the results of testing[26], and therefore I feel that testing should be tightly regulated, just as logistical cloning would need to be. Each child should be carefully evaluated professionally to determine their developmental stage prior to the commencement of any form of genetic testing.  We must be sure that the child is capable of certain reasoning abilities before undergoing testing, by evaluating their relative emotional maturity and ability to comprehend ideas such as illness and death.  While Sevick et al. feel that the parents are the best judges of whether or not their child is prepared[27], I feel that this alone is insufficient and that thorough professional evaluation is necessary as well.  It might be of benefit to counsel the parents prior to testing as well, to make sure they understand to the fullest extent possible the impact that testing could have on their child.

To illustrate what might qualify as a logistical exception, consider the following example.  Say a young parent has come to learn that the gene she carries for Huntington’s disease typically shows an onset of symptoms earlier in life than the usual variety; symptoms may begin to show as early as childhood or as late as perhaps the third decade. She hasn’t experienced any symptoms yet, but she is still early in her third decade.  She has a child, and she wonders if her infant has inherited the gene as well, and if there is a possibility that symptoms may appear earlier for the child than for her.  She decides that it would be in the best interest of her family to know early if the child is positive for the disease, because if the child does begin to show symptoms early, her family will need to be prepared to care for the child.  Knowing in advance may afford her precious time to make arrangements for her child’s future care.  This is further complicated if the woman happens to be a single mother, because her child’s disease status may influence her decision on who would be best fit to take over the care of her child once she begins her inevitable decline.

Exceptions to testing for late-onset genetic diseases should be able to demonstrate that the testing offers overall benefit for the family as a whole or the child (e.g. in the arrangement of future care), which outweigh the risks of harm to the child associated with the testing.  The level of urgency in obtaining the test results should also be considered; for cases in which there is no beneficial reason to pursue testing early in life and prior to the child reaching an age when he is capable of making the decision for himself, testing should generally not be pursued.  In cases where early testing would be beneficial to the family or child, the child should be properly evaluated by doctors or psychologists to determine if the child is cognitively capable of understanding disease and death. Additionally, the parents should be counseled on the risks of harm to their child prior to testing being pursued.

It may seem at this point that the logistical exceptions for cloning are more pressing than for testing.  However, it is necessary to recognize that in the case of testing, we are dealing with a child who already exists.  We must be prepared to consider that in certain cases there may be compelling reasons to subject the child to testing, ultimately for his benefit. In contrast, the discussion of cloning ultimately considers something that is for the parents’ benefit (e.g. having biological children), because the child in question does not even exist yet.  In practice, there are probably fewer cases which may qualify as logistical exceptions to testing for late-onset genetic diseases than logistical exceptions for cloning, but it is important that we recognize that these cases do exist so we are prepared to handle them when they arise.

Therefore, I propose we reevaluate the application of the right to an open future argument to the case of testing for late-onset genetic diseases in children.  It seems more reasonable that we should assess the reasons for parents seeking to have their children tested for late-onset genetic diseases, similar to how Davis proposes we assess the reasons of prospective parents for seeking to reproduce through cloning.  There would most certainly be cases where knowledge of disease or carrier status would prove not only to be beneficial to the child, but also the family as a whole.  As Sevick et al. point out, in the case of Huntington’s disease, approximately fifty percent of families would find relief in knowing that their child was not after all positive for the Huntington’s gene[28].  It would be beneficial for us to expand the literature on the effects of testing for late-onset genetic diseases on both children and their families, by conducting further studies.  Since current literature seems to suggest that there may be more benefit to it than Davis initially gives credit[29], I feel this is worthy of further investigation.  I find it is usually the case that most rules have reasonable exceptions, and I think this very much applies to both cloning and testing for late-onset genetic diseases.

 

Works Cited

Davis, D. Genetic Dilemmas. New York: Oxford University Press, 2010.

Sevick, MA, Nativio, DG, & McConnell, T. “Genetic Testing of Children for Late Onset Disease.” Cambridge Quarterly of Healthcare Ethics, 2005: 47-56.

 

 

[1] Davis, D. Genetic Dilemmas. New York: Oxford University Press, 2010.

[2] Ibid.

[3] Ibid.

[4] Ibid.

[5] Ibid.

[6] Ibid.

[7] Ibid.

[8] Davis, 2010.

[9] Ibid.

[10] Ibid.

[11] Ibid.

[12] Ibid.

[13] Ibid.

[14] Ibid.

[15] Ibid.

[16] Ibid.

[17] Ibid.

[18] Davis, 2010.

[19] Sevick, Nativio, and McConnell 2005.

[20] Ibid.

[21] Ibid.

[22] Ibid.

[23] Davis, 2010.

[24] Sevick, Nativio, and McConnell 2005.

[25] Ibid.

[26] Ibid.

[27] Ibid.

[28] Sevick, Nativio and McConnell 2005.

[29] Sevick, Nativio and McConnell 2005.