Gabriela Arriagada Bruneau
As scientific progress moves at a higher rate than our own moral understanding, we are encountering scenarios that increase our moral qualms towards the limits of human genetic intervention. Consequently, we ask ourselves if we should permit human genetic interventions and, if permissible, to what extent? In this essay, I claim that our concerns and hesitations towards the implementation of such practices are well founded. Here I will argue against Savulescu’s proposal in his article “Deaf lesbians, ‘designer disability’, and the future of medicine” which claims that we should extend freedom of reproductive choices by accepting the non-identity argument. Savulescu states that if a conceived child is not worse off than non-existing, there is no harm done to such child. Therefore, a wide range of reproductive choices become permissible. In contrast, I claim that even if we do accept the non-identity argument of his view, there are still reasons to narrow the extension of such practice. There must be a limit to the scope of human intervention.
Before entering the discussion about reproductive choices, it is important to highlight what falls into the category of reproductive human genetic intervention. When I refer to reproductive human genetic intervention, I will have in mind an external interference that deliberatively determines how a human being will be by altering its natural conception. This can include positive or negative interventions. Positive interventions are those that intend to prevent an overall bad outcome for the patient, such as having a lethal disease. In such cases, progenitors can, for example, choose to eliminate a gene that causes cancer in their offspring. On the other hand, negative interventions are those which seek the enhancement or deprivation of certain qualities based on motivations that fulfil an ulterior motive or desire of the progenitors. Having this distinction clarified, I will reformulate Savulescu’s argument.
- Savulescu’s argument
While some couples might want to use the practice of genetic intervention to avoid diseases or improve the healthiness of their offspring, Savulescu defends the case of choosing a disability, an irreversible life option for a child.
A lesbian couple deliberatively decided to create a deaf child having the option not to do so. The procedure involved the use of their friend’s sperm that had the condition carried in his family for five generations. The main argument in favour of the intervention is based on the future well-being of the child. The couple considers the deaf community as part of their cultural identity and wants to share this with their child. Also, being deaf for them is not conceived as a disability but rather a “sophisticated […] language that enables them to communicate fully with other signers as the defining and unifying feature of their culture”.
Savulescu argues that we should extend the freedom of reproductive choices so that we can meet the best possible life prospect for the future child. We must give individual couples the freedom to act under their own value judgement of what is constitutive of the best possible life prospect. A couple’s judgement will be morally acceptable if no child is harmed. And, because a negative intervention does not inflict any harm to the child (if the intervention is prevented, then another child would have existed) then the child is not worse off than it would have been otherwise. Therefore, negative interventions are morally permissible.
III. Analysing the argument
If we accept Savulescu’s argument while acknowledging there is no identity problem, the action of creating a deaf child produces no harm. If we accept that argument as plausible, intuition still points out that something might be morally wrong, we must clarify what.
- Parental duties
It could be argued that the parents have the duty to look after the well-being of their child. However, in this case there is an imposition from the progenitors to the child, of a physical and psychological burden. This contradicts what we generally consider as parental duties, i.e., providing the best well-being possible. Savulescu’s argument of the child not being worse-off is insufficient. Once the child does come to exist, the damage is activated. By activated I mean that causing the existence of a disabled child damages the existent child by giving him a burden. Imagine that you had the choice of being conceived with a burden-bag or without one. Your parents, having the choice to give you no burden-bag they decide to give you one, arguing that is the best option for them to raise you and, therefore, to give you the best possible life prospect. However, although you are not directly harmed by coming into existence with the burden-bag, their decision is casually related to the fact that you indeed have it. This bag activates over time, when the effects of the burden start restricting the limits to increase your well-being. In the case of the two deaf lesbians, the deaf child is not harmed by being conceived deaf per se, but because the implications of that choice do not seem to increase the child’s well-being, but rather limit it.
The damage arises from the decision of the parents wanting to create a disabled child; in other words, the motivations behind that decision do not seem morally sufficient to justify the creation of a child carrying such burden.
- External and internal motivations
Motivations behind the decision to create a disabled child in this case, are related to an internal motive. An internal motivation I take to be related to a fulfilled desire, for example, arguing that it will be the most convenient way for the parents to raise a child because of their cultural beliefs. On the contrary, external motivations are linked to a profit or good obtained, for example, deciding to do a genetic intervention to my child to get financial aid from the government. In the case of the two deaf lesbians, it is argued that their motives are not founded on personal greed. However, if the argument to accept such practice is because they consider it part of their culture, they could still include that into the child’s life without depriving him of his ability to hear. Furthermore, there seems to be an element of contradiction. If what matters is the inclusion of their child to the deaf community it does not follow that the child should necessarily be deaf and use sign language as a requirement to share their cultural identity. The best way to achieve cultural identity and protect the well-being of the child will certainly not be making the child deaf. The apparently well-intended claim about personal beliefs, could be easily identified as selfish or ultimately greedy.
Allowing negative interventions makes it harder to justify any value judgement based on the personal beliefs of the progenitors. It is not clear why we should accept or encourage some of them as a morally permissible practice. The lack of clear limitations overlooks the potential danger that this freedom of reproductive choices entails. But, to discuss the limits of reproductive freedom, first we need to review the concept of the best possible life prospect stated by Savulescu.
- The concept of the best life prospect
Savulescu constantly mentions the best life prospect but without giving a clear definition of the concept. The closest delimitation is this:
[…] my value judgment should not be imposed on couples who must bear and rear the child. Nor should the value judgment of doctors, politicians, or the state be imposed directly or indirectly […] on them. The Nazi eugenic programme imposed a blueprint of perfection on couples seeking to have children by forcing sterilisation of the “unfit,” thereby removing their reproductive freedom. There are good reasons to engage people in dialogue about their decisions, […] but in the end we should respect their decisions about their own lives.
However, following this logic to argue for reproductive freedom, can end up in an undesirable outcome. Savulescu is not regarding the Nazi policy as immoral but only as unfair, because it restricts reproductive freedom. According to Savulescu, we should respect the parent’s decisions even if we don’t share their value judgement. The problem of supporting policies that allow this extended freedom is that we face the endorsement of wrongdoing, e.g. permitting the parents to victimise a child with a perverse life prospect like conceiving a deaf child. It is necessary to keep in mind that by accepting such permissibility, we are also endorsing policies that will allow extreme practices that could bring morally undesirable consequences if not carefully narrowed.
- A conceptual discrepancy: reproduction freedom
As stated before, to Savulescu, endorsing a practice that allows negative interventions also implies that no person or government entity can interfere with the progenitor’s decisions. In a way he is right, ultimately the decision of wanting to have a child or not, should be respected. However, there is a difference between deciding to have a child and deciding what type of child I want. Reproductive freedom strikes me as the freedom to choose if I want to procreate or not, with whom, under what method and at what point of my life. A completely different concept is to have the freedom to choose your offspring based on your own value judgement. It is not clear why we should have any right to decide how our offspring will look like or what type of abilities they should have. What we are discussing here are the limits of genetic intervention applied in reproductive processes, not freedom of reproduction, which can be slightly misleading. Regardless of this distinction, Savulescu is not wrong to raise this wider concept of freedom of human genetic intervention in reproduction. Nevertheless, the problem remains, do we have enough reasons to extend this freedom without restriction?
- Resentfulness and the scope for the best life
As I mentioned before, I believe having negative interventions could lead, overall, to a disastrous scenario. But how?
By allowing progenitors to select traits for their children we are permitting children to resent their parents. When it comes to the case of the two deaf lesbians, we can wonder if that child will not resent them for making him deaf, having the possibility to avoid it without further trouble. Under what authority do they think they can choose if I get to have a ‘good life’ or not? –the child might ask. What may seem to be a good enough reason for the progenitors, could as well seem a selfish motivation for the affected child. If the argument to support an extended freedom of genetic interventions in reproductive processes is to give the best life prospect to the child, then it is highly debatable that a wide range of negative interventions might fall under that category. This resentment, a direct consequence of the progenitors’ decision, also highlights an important aspect of this debate: the best life prospect is, in the end, decided by the child. What parents must do is to guarantee the maximization of the scope for the autonomy of the child, i.e., do not intervene in a way that will abolish it or override it.
To exemplify why conceiving a deaf child is, under my analysis, morally incorrect, the concept of need presented by David Wiggins can help clarify why the progenitors’ intervention goes against the needs of the child, i.e., his well-being. “[…] a person needs x [absolutely] if and only if, whatever morally and socially acceptable variation, it is […] possible to envisage occurring within the relevant time-span, he will be harmed if he goes without x”. Under this definition of need, we can see that by conceiving a deaf child, he will be harmed. The hearing ability is something the child needs. But there are different factors that can help us classify the needs more accurately. The five factors stated by Wiggins are: urgency (referring to the imperativeness of the need), gravity (the significance of the harm), basicness (how primary that need is for survival), entrenchment (how easily we can dispose the need) and substitutability (extent to the substitution of the need). These factors can provide a crucial role in the generation of public policies regarding the limitations of negative interventions related to human genetic interventions in reproduction. These dimensions allow us to prioritize needs. Hence, by the given guidelines, a public policy will have to imply a restriction in the freedom of reproductive choices by not allowing negative interventions which in most –if not all cases– imply a direct neglect of a high ranked need.
If we were to consider negative interventions as morally permissible, we will be agreeing to an intervention that surpasses the best life prospect for the child, and becomes the best life prospect imposed by the progenitors’ requirements. Savulescu’s argument recklessly overlooks the potential harms of extending reproductive choices. It is inevitable, that given the scientific progress development, a wide range of possibilities will be at our disposition. Notwithstanding, what should be essential to decide on general policies for genetic interventions should be the respect for autonomy and the preservation of the well-being of the child to-be. By autonomy, I understand the idea of freedom from external control. Part of what preserves our autonomy is our right to choose, and if we allow progenitors to interfere with the aleatory process of conception in a negative way, we are overriding that child’s autonomy, coercing him to be a product of the desire of his progenitors. Furthermore, if we endorse these types of interventions, we end up trespassing the child’s well-being, like in the case of the two deaf lesbians. While they argue that they are choosing the child to be deaf for his well-being, this does not imply that the deprivation of hearing will be what constitutes the best possible outcome to achieve such end. And by well-being I understand a state of the higher healthiness and happinessThis means that if we come to live in a damaged environment in which having white skin is dangerous to your health, then intervening a child to avoid the trait of being white skinned will become a positive intervention instead of a negative one, like it is now.
Our environment changes and the moral understanding of our needs should change with it. But based on our present situation, I claim that we should only allow positive genetic human interventions in reproduction, limiting the practice of negative interventions. This, however, will most likely change; but only when a modification shall be required will it be prudent to reconsider those limitations. For now, we should refrain from endorsing interventions such as intentionally conceiving a deaf child based on cultural or personal belief arguments. If we can recognize such intervention as negative, and we can objectively state that being deaf implies the lack of a useful and desirable ability for any human life, then the two deaf lesbians are trespassing the morally acceptable limit for reproduction genetic intervention.
 Savulescu, J (2002) Deaf lesbians, ‘designer disability’, and the future of medicine, British Medical Journal 325, pp. 771-773.
 Spriggs, M. (2002) Lesbian couple create a child who is deaf like them. Journal of Medical Ethics 28, p. 283.
 Savulescu, J (2002) p. 772.
 Wiggins, D. (1987) Needs, Values, Truth. Essays in the Philosophy of Value, Basil Blackwell: Oxford.
 I will consider happiness, for the sake of the argument, as an overall state of fulfilment of needs. Needs being physical and psychological.