Abstract
Though many ethical reflections on genetics are of a speculative and futuristic kind, concentrating on techniques that “come closer to being actualized,” it is reasonable to say that in contemporary Western societies, at least one type of genetic intervention has already become widely actualised and well-established, viz. the framework of techniques of prenatal genetic diagnosis (PGD). Put shortly, these techniques make it possible to know in advance about the genetic condition and health status of the unborn child, thus making it possible either to prepare for the birth of a disabled child or to avoid this by aborting the foetus with congenital disorder.
This essay is a slightly revised and updated version of earlier work (Denier 2010). As such, it is the result of several discussions on many occasions. I am thankful to John Alexander, Bart Capéau, Bart Engelen, Chris Gastmans, Jimmy Geutjens, Sylvie Loriaux, Stijn Neuteleers, Thomas Nys, Erik Schokkaert, Joris Van Damme, Antoon Vandevelde, Carine Vande Voorde, and all the participants to the May 2011 Conference on ‘Justice, Luck and Responsibility in Health Care’ in Leuven.
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Notes
- 1.
In the fifth wave of the World Values Survey (2005–2008), carried out in 57 countries all over the world, 76.9% of the respondents (n = 71,421) found the following situation fair: “Imagine two secretaries, of the same age, doing practically the same job. One finds out that the other earns considerably more than she does. The better paid secretary, however, is quicker, more efficient and more reliable at her job. In your opinion, is it fair or not fair that one secretary is paid more than the other?” World Values Survey is accessible online: www.worldvaluessurvey.org. I am grateful to Erik Schokkaert for pointing my attention to this.
- 2.
Here, I am expressly assuming that the situation of giving birth to a congenitally handicapped child before techniques of PDG became common practice indeed was a brute luck situation in the following sense. In previous times, before the sexual revolution of the 1960s, people gave birth to children on the rhythm of nature. As for the amount of children, or their health status, there was little to nothing that could be done to control it (except for fully abstaining from sexual activity). It was, much more than today, a matter of nature’s course. Today, however, we can decide on much in these matters: whether or not to have children, when we want to have them, and whether or not we want the fetus to be tested for congenital disorder, and whether or not to continue the pregnancy in case of a congenital disorder. All this has become, much more than before, a matter of choice (see also van Tongeren 1995).
- 3.
With this, I refer to John Rawls’s concept of Reasonable Pluralism, as an inherent feature of all modern democratic societies. It entails the recognition that citizens endorse different, often incompatible, comprehensive doctrines, that is, a pluralism of religious, philosophical, or moral worldviews, which include “conceptions of what is of value in human life, and ideals of personal character, as well as ideals of friendship and of familial and associational relationships, and much else that is to inform our conduct, and in the limit to our life as a whole.” (Rawls 1996, p. 13). Many of these comprehensive and incompatible doctrines are endorsed by citizens who are “reasonable” in the sense that they recognize that there are limits to what can be justified to others and “will think it unreasonable to use political power, should they possess it, to repress comprehensive views that are not unreasonable, though different from their own.” (Rawls 1996, p. 60).
- 4.
For this I am much indebted to Kurt Devooght. See his Essays on Responsibility-Sensitive Egalitarianism and the Measurement of Income Inequality (non-published Ph.D., KU Leuven, Faculty of Business and Economics), Leuven, 2003, esp. ch. 1, pp. 7–36 for an extensive and detailed analysis of various conceptions of responsibility.
- 5.
Insurance is a form of risk management, primarily used to hedge against the risk of a contingent loss. Insurance is defined as the equitable transfer of the risk of a loss, from one entity to another, in exchange for a premium, and can be thought of as a guaranteed small loss to prevent a large, possibly devastating loss. A crucial element in insurance is uncertainty about the probability of the loss. If the likelihood of the insured event is high, and the cost of the event is known to be large, the premium to be paid will be high as well. Furthermore, the event that constitutes the trigger of a claim should be fortuitous, or at least outside the control of the beneficiary of the insurance. The loss should be ‘pure’ in the sense that it results from factors we don’t control. Otherwise, the events are generally not considered insurable. Congenital handicaps are problematic in these respects since techniques of PGD make it possible to know in advance about the genetic condition and health status of the unborn child and to avoid the birth of a handicapped child by aborting the handicapped foetus. Furthermore, the costs that come with the birth of a handicapped child – lifelong support of special needs – may be so high that the premium to be paid becomes unaffordable or even useless, or insurance companies may simply deny coverage on grounds of the fact that the insurance does not involve an unpredictable risk, but a given fact.
- 6.
In this context, it is necessary to reflect on the distinction between two ways in which the previously mentioned idea of constitutive luck appears, that is in the natural and in the social way, and their respective implications in matters of social justice. Both natural endowments (having genes for certain talents) and the social conditions (the social environment) in which individuals were born are given facts, things that are bestowed on them. They did not cause them, nor can they change them, and both are integral or essential to people’s constitution or self-identity. Why then, are corrections of social conditions (like eradicating poverty, compensating for racial or gender discrimination in the past) necessary measures to be taken by every just society, whereas correcting natural conditions (like avoiding congenital handicaps on a large-scale social level) is problematic? What’s the difference? Two things can be said by way of reply. Firstly, it is important to point at the fact that measures like eradicating poverty or compensating for discrimination intend to support people by eradicating social obstructions to their possibilities to lead a good life. These obstructions are generally seen as bad social circumstances. This is not necessarily the case for measures like eradicating congenital handicaps. It is much less clear that mandatory testing can be said to support people in leading a good life, since many people do not see congenitally handicaps, such as Down syndrome, for instance, as bad circumstances, necessarily to be avoided by collective measures. Secondly, the flip side of this first argument is the following: a given natural or social fact can become a blessing or a burden by the way in which societies and social institutions deal with them. The basis of corrections of social conditions (like avoiding discrimination on the basis of social class, race, gender or sexual preference) has been the idea of equality of respect. The idea of correcting natural conditions (by preventing the birth of congenitally handicapped people) does not start from equality of respect. On the contrary, it implies discrimination on the basis of handicap. Instead of collectively preventing handicapped people to be born by making testing mandatory, a just and respectable social policy should compensate for it by providing the necessary social support for these people to lead a good life.
- 7.
One might consider whether replacing the natural jungle with the social jungle does not constitute progress, albeit incomplete progress toward a goal of increased justice. Two points are important to bear in mind in this regard. The first is based on the idea of moral arbitrariness and refers to what we consider as being relevant or irrelevant in matters of justice. In A Theory of Justice John Rawls writes: “The natural distribution is neither just nor unjust […]. These are simply natural facts. What is just and unjust is the way that institutions deal with these facts” (Rawls 1971, p. 102, 1999, p. 87). Here, Rawls refers to the fact that natural differences (such as race, gender, sexual preference, …) can be reinforced or mitigated by social policy. Bear in mind the fact that in previous times, being black or being a woman implied that one was less worthy, and that homosexuality was a disease, necessarily to be cured. This brings me to the second point. The answer to the question whether replacing the natural jungle with the social jungle does not constitute progress, is that it all depends on what is being reinforced or mitigated, to what extent, and in which respects. We condemn gender or race discrimination because the principle of equal respect demands that social barriers to equal treatment are being removed (negative action) rather then being reinforced. On the other hand, though, it is sometimes necessary that certain positive actions are being taken in order for people to be able to participate in social life on an equal basis (such as the provision of ramps in buildings or wheelchair access in busses, etc.). The essence of the argument is the following: in dealing with natural differences, social institutions have to promote and preserve equality of respect. Only then, one can speak of progress toward the goal of justice. When speaking of the natural jungle, I refer to the opposite, viz. to the fact of socially reinforcing inequality of respect.
- 8.
With this, we touch upon the rights and freedoms, as laid down in the Universal Declaration of Human Rights, especially article 1, “All human beings are born free and equal in dignity and rights”, article 3 “Everyone has the right to life, liberty and security of person”, article 22 “Everyone, as a member of society, has the right to social security and is entitled to realization, through national effort and international co-operation and in accordance with the organization and resources of each State, of the economic, social and cultural rights indispensable for his dignity and the free development of his personality”, article 25 “Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control”, article 26 “Everyone has the right to education. Education shall be free, at least in the elementary and fundamental stages. Elementary education shall be compulsory. Technical and professional education shall be made generally available and higher education shall be equally accessible to all on the basis of merit. Education shall be directed to the full development of the human personality and to the strengthening of respect for human rights and fundamental freedoms.” We also touch upon the list of Central Human Capabilities, which are the central elements of truly human functioning, as formulated by Martha Nussbaum (2003). For an extensive discussion of the capabilities, and their function within just health care, see also Denier (2007).
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Denier, Y. (2013). On Justice, Luck and Moral Responsibility Concerning Prenatal Genetic Diagnosis. In: Denier, Y., Gastmans, C., Vandevelde, A. (eds) Justice, Luck & Responsibility in Health Care. Library of Ethics and Applied Philosophy, vol 30. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-5335-8_4
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