Abstract
Suppose we accept prenatal diagnosis and the selective abortion of fetuses that test positive for severe genetic disorders to be both morally and socially acceptable. Should we consider prenatal diagnosis and selective abortion (or other genetic interventions such as preimplantation diagnosis, genetic therapy, cloning, etc.) for nontherapeutic purposes to be acceptable as well? On the one hand, the social aims to promote liberty in general, and reproductive liberty in particular, provide reason for thinking that individuals should be free to make their own decisions about whether or not to employ whatever genetic services might be developed and offered by private enterprise. On the other hand, interventions aimed at enhancement would (in many cases) presumably only be available to those who are financially fortunate. A worry is that unequal access to enhancements that provide competitive advantages to offspring will further and more permanently increase existing unjust disparities between the haves and have-nots. The aim to promote liberty might thus conflict with the social aim of equality. An additional worry is that the development and provision of nontherapeutic genetic interventions would drain limited medical resources away from therapeutic purposes which would ultimately be more fruitful. The promotion of liberty might also thus conflict with the aim to promote aggregate utility. Assuming there is no reason to think that the promotion of liberty should be given absolute priority over both equality and aggregate utility, we need to think more about how to make trade-offs between these three legitimate social aims.
Zusammenfassung
Angenommen wir nennen die pränatale Diagnose und selektive Abtreibung von Föten mit nachweislich schweren genetischen Störungen moralisch und gesellschaftlich akzeptabel. Sollten wir dann die pränatale Diagnose und selektive Abtreibung (oder andere genetische Interventionen wie zum Beispiel Präimplantationsdiagnostik, Gentherapie, Klonung etc.) für nicht therapeutische Zwecke ebenfalls als akzeptabel erachten? Einerseits geben die gesellschaftlichen Ziele, Freiheit im Allgemeinen und Reproduktionsfreiheit im Besonderen zu fördern, Grund zu der Auffassung, Individuen sollten frei entscheiden können, ob sie die diversen genetischen Dienstleistungen, die von Privatunternehmen entwickelt und angeboten werden mögen, in Anspruch nehmen wollen oder nicht. Andererseits darf man annehmen, dass Interventionen, die auf eine Verbesserung abzielen, (in vielen Fällen) nur den finanziell besser Gestellten zugänglich wären. Es besteht die Sorge, dass ungleicher Zugang zu Verbesserungen, die dem Nachkommen Wettbewerbsvorteile verschaffen, existierende ungerechte Disparitäten zwischen Arm und Reich weiter und dauerhaft vertiefen könnte. So könnte das Ziel, Freiheit zu fördern, mit dem gesellschaftlichen Ziel der Gleichheit in Konflikt geraten. Eine zusätzliche Sorge ist, dass die Entwicklung und Bereitstellung nicht therapeutischer Interventionen begrenzte medizinische Ressourcen für letztlich lohnendere therapeutische Zwecke verschlingen würden. So könnte die Förderung der Freiheit auch mit dem Ziel in Konflikt stehen, den Gesamtnutzen zu fördern. Nimmt man ferner an, es gäbe keinen Grund zu der Auffassung, der Förderung der Freiheit sollte absolute Priorität über Gleichheit und Gesamtnutzen eingeräumt werden, so ergibt sich die Notwendigkeit, mehr über Kompromisse zwischen diesen drei legitimen gesellschaftlichen Zielen nachzudenken.
Résumé
Supposons que nous acceptions que le diagnostic prénatal et l'avortement sélectif des foetus présentant après avoir été testés de graves anomalies génétiques soient considérés comme moralement et socialement acceptables. Devons-nous considérer que le diagnostic prénatal et l'avortement sélectif (ou d'autres interventions génétiques telles que diagnostic préimplantatoire, thérapie génétique, clonage, etc.) dans des buts non thérapeutiques le soient tout autant ? D'un côté, le critère social veut promouvoir la liberté en général, et la liberté de la reproduction en particulier, fournissant ainsi des arguments pour penser que les individus doivent être libres de prendre leurs propres décisions et de choisir de recourir ou non aux services génétiques, quels qu'ils soient, ayant été développés et proposés par des entreprises privées. D'autre part, des interventions visant une amélioration ne seraient (dans de nombreux cas) sans doute accessibles qu'aux plus fortunés. L'une des préoccupations concerne le fait qu'un accès inégalitaire aux développements assurant un atout compétitif à la progéniture fera augmenter de façon plus marquée et plus durable les disparités existantes entre les riches et les pauvres. L'objectif libertaire pourrait entrer en conflit avec celui de l'égalité sociale. Autre inquiétude, le développement et la réalisation d'interventions génétiques non thérapeutiques risqueraient de détourner des ressources médicales limitées d'objectifs thérapeutiques auxquels ils seraient plus utiles. La promotion de la liberté pourrait alors être également en contradiction avec l'objectif d'utilité collective. Si l'on postule qu'il n'y a aucune raison de croire que la promotion de la liberté doit avoir la priorité absolue tant sur l'égalité que sur l'utilité collective, il nous faudra réfléchir davantage sur la manière de trouver des compromis entre ces trois objectifs sociaux légitimes.
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Notes
I roughly define eugenics as the "science" which aims to improve human lives by employing an understanding of heredity in the exertion of control over who gets born or who reproduces. I hope it will be clear to the reader that (1) there are good reasons for using such a definition of 'eugenics', and that (2) the question of whether or not this is the "correct" definition of 'eugenics' is quite irrelevant to the main issues I aim to explore. I will primarily be concerned with questions regarding the ethics of genetically informed reproductive decision making and the ways in which the government should (or should not) be involved.
Another claim made to distinguish the old from the new eugenics is that while the old eugenics was based on bad science, the new eugenics will be based on a dramatically improved understanding of genetic inheritance. For a brief discussion of the relevance of this scientific contrast, see my "Neugenics?" (pp. 23–24 in Selgelid MJ 2000).
Another problem with the old eugenics, clear in retrospect, was that practitioners of the old eugenics were both (1) mistaken about the effectiveness (towards the promotion of efficiency) of their methods and (2) mistaken in their beliefs regarding heredity. Governments that indulged in the old eugenics should thus also be criticized for making hasty and inadequately founded decisions.
Dangers posed by the free market may be particularly relevant to the situation in contemporary Germany which is moving towards a more commercialized health care delivery system (Heubel 2000).
Here and elsewhere I am using the terms 'efficiency' and 'aggregate utility' interchangeably.
Perhaps appealing to the presumption that, in the absence of exceptional circumstances, human life should be preserved. (Such a view, of course, would be controversial.)
Perhaps depending on their stage of development.
Given the fact that escalated costs make medical care unavailable to many, this point should not be taken lightly.
I should here make more explicit my view on abortion put forth in Selgelid 2001. There I argue that the moral status of the fetus is ultimately uncertain and that this uncertainty itself makes abortion morally problematic. Secular philosophy does not conclusively demonstrate that fetuses lack rights and value altogether; and, secular philosophy cannot tell us exactly what rights or how much value, if any, are embodied by fetuses. A wide range of views (about the moral status of the fetus) are compatible with both reason and the available evidence. There is at least a chance or risk that fetuses do embody significant moral status. Given this possibility, abortion should not be procured for trivial reasons (such as the aim to select for eye color). Given that it is not clear that the fetus does in fact possess much moral status, on the other hand, abortion can be considered acceptable in exceptional circumstances. This view is appropriate for a religiously neutral state and compatible with widely shared ideas about the circumstances in which abortion should be considered morally permissible—i.e., cases where pregnancy is due to rape or threatens the life of the mother or would lead to a life full of suffering (and cases where no child is wanted or likely to be properly cared for).
P. Devlin disagrees (Devlin 1994).
Ultimately I will disagree with Mill's position by claiming that legislation is sometimes justified in order to promote equality and/or aggregate utility even when it is not clearly required in order to prevent "direct" harm. Mill seems to think that the maximal promotion of liberty will inevitably lead to the maximization of aggregate utility. This to me sounds dubious; and, in any case, I believe that equality should also be taken into account. (Paternalism is not the only motive for prohibiting practices that do not entail "direct" harm.) For the purpose of my current discussion, however, this disagreement with Mill is beside the point.
The idea here is that in some cases a risk of harm is warranted but in others it is not.
The objection might include the claim that a religiously neutral state must take the idea that the moral status of the fetus is uncertain—and the idea that there is a decent chance that the fetus does in fact embody significant moral status—quite seriously.
In exceptional circumstances, on the other hand, we would deny that this kind of action should be punished (i.e., suppose that it is necessary to scare away a deadly beast and there are not too many people in the vicinity who might get wounded).
I thus recommend a moral risk-taking strategy (under conditions of uncertainty) to parents without claiming that this particular risk-taking strategy should be enforced by law.
It is important to explicitly inform the reader that this view is compatible with a relatively permissive policy towards abortion. In my view, the fact that no child is wanted counts as a compelling reason for terminating pregnancy.
See, for example, Harris 1992.
Such discussions, and again I accuse Harris, also often fail to adequately address the (in)justice (regarding the distribution of limited, often public, medical resources) of the research which might make such interventions possible.
For further discussions of genetic therapy see Anderson 1999, Anderson 1989 and Anderson and Fletcher 1980.
See Kolata 2001.
This kind of issue is also discussed in Kitcher 1996, Buchanan et al. 2000, and McGee 1997.
They could, of course, say, "let's try to have a kid that will turn out to be a basketball star; but, let's love, accept, and encourage him whatever he turns out to be like." A real worry, however, is that the former aim would ultimately corrupt and compromise the latter.
These would include liberty, child well-being, equality, and aggregate utility. We will be discussing equality and aggregate utility shortly.
i.e., limiting the child's options by making him outrageously tall, for example.
i.e., the rearing of the child in question becomes focused on realizing what the genetic intervention was supposed to bring about.
This point was made by Singer 2000; also see part V in Van De Veer and Pierce 1994. Recall that one of the selling points of the liberal vision of a new eugenics will have been misleading. The liberal new eugenics was supposed to be different from the old eugenics because the former is supposed to be based on individual free choice, while the latter was based on coercion. If pressures to conform become strong enough, however, then the "freedom" of the new eugenics will (ultimately) be a hoax.
From a Kantian perspective, the right to use genetic technologies in order to attain positional advantages for one's child would thus be denied in virtue of the fact that the maxim of one's action would not be universalizable (Kant 1993).
The same might be said about public transportation in many, or perhaps most, American cities. The lack of (much) viable public transportation in a city such as Los Angeles (home to a population approximately equivalent in size to that of Australia), for example, surely reveals a fatal flaw somewhere in the system. It is surprising that Americans are not more troubled by the lack of these particular public goods. (Basic science might be considered a strength of the United States in terms of public goods. The fruits of such science, however, are too often not available to everyone (Dutton 1988). Another strength of the United States, with respect to public goods, is defense ... plenty of bombs for everyone.)
The US system, of course, is not entirely laissez-faire, and its health care industry does not meet all of the (theoretical) conditions of a free market. Will some say that the problem is that the market is not free enough? My best guess is that the opposite is true.
"Misprescribing for Health Care", The Economist, 14 April 2001, p. 27. Note that Germany did not fare much better: 11% of GDP ("second only to the United States") spent on health care, and ranked 25th overall by WHO.
"Enhancement" technology aimed at improving immunity from disease (depending on its expense) might turn out to be a different story. My point for now is that there are at least some interventions aimed at enhancement which we should not expect to see offered. I have attempted to avoid making sweeping claims which draw sharp moral distinctions between "enhancements" and "treatments" of disease; hence my focus on particular kinds of enhancements—such as those aimed at increased height.
300 mutations exist for a gene associated with cystic fibrosis, but only a few of them account for most cases of the disease. There are similarly hundreds of mutations found in genes associated with breast cancer. The numbers involved will sometimes make genetic testing quite complicated (pp. 22–24 in Mehlman and Botkin 1998).
The following sentence is not a quote from Parens.
See Daniels 1985.
To avoid, for the moment, a complex discussion of concepts of disease and health, my point is that the imagined intervention aims at what we prototypically consider to be diseases and what we prototypically consider to be health.
The development of such technologies would inevitably at least make use of much research that was supported by the community as a whole. It may be legitimate for society to impose limits on the ways in which public (intellectual) property might be put to use.
This would thus appear to be a form of tyranny according the position of Walzer (1983).
She talks about a drain of resources in terms of physicians in particular. My point is that we should be concerned about this kind of phenomenon more generally—i.e., also taking researchers, research facilities, equipment, production facilities, etc. into account.
Emerging information from genetic science itself, regarding the kinds of interventions likely to become attainable, will also be revealing.
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Acknowledgements
I have benefited from guidance by Philip Kitcher. I also thank the following institutions for providing generous research support: (1) the Europaische Akademie, Bad Neuenahr–Ahrweiler, Germany, (2) the Research Office and the Faculty of Health Sciences Division of Bioethics at the University of the Witwatersrand, Johannesburg, South Africa, and (3) the Fundacion Seneca and Department of Philosophy at the University of Murcia, Murcia, Spain.
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Selgelid, M.J. Ethics and eugenic enhancement. Poiesis Prax 1, 239–261 (2003). https://doi.org/10.1007/s10202-003-0024-7
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DOI: https://doi.org/10.1007/s10202-003-0024-7