Knowledge And Rationality

Genetic testing serves to resolve the uncertainty over whether a person is or is not a carrier of a certain genetic abnormality. In principle, after genetic testing a person can rationally start planning the future. This is especially the case with a diagnosis which shows that the person is not a carrier of the gene in question. After a test result like this, people may feel that they have got their future and freedom back again.

In the case of a test result revealing a certain genetic abnormality, the consequences for a person's freedom seem to be highly ambiguous, however (Quaid, 1994). On the one hand, a person clearly gains certain advantages from this knowledge with regard to life planning and family planning. He or she can adjust plans to the purported health expectations. On the other hand, with genetic knowledge a lot of uncertainties arise: it cannot be predicted when the up-to-now asymptomatic person will start suffering from symptoms, how severe these symptoms will be, what the course of the disease in this individual case will look like exactly, etc. The mere knowledge of genetic status often does not lead to any concrete certainty about the future course of life. Difficulties arise in cases in which, by means of a genetic diagnosis, nothing but an elevated risk or a predisposition to a multifactorial condition has been stated. Thus, difficulties in adequately assessing and interpreting the results may lead to enormous drawbacks.

According to the preference or desire satisfaction theory it is good for persons to aim at a maximum satisfaction of desires and preferences. In order to satisfy one's desires and preferences effectively, it is necessary for an autonomous person to know the facts that are relevant for deciding the issue in question (Husted, 1997). From this point of view it is clear that—at least for members of genetic risk groups—autonomous and rational decision-making with regard to one's future life course requires genetic knowledge.

As Diana Fritz Cates points out, genetic knowledge can even be considered to be an important presupposition for the exercise of virtue, for it tells us "who we are [...], what we have control over and what we must suffer as beyond our control" (Cates, 1994, p.60). According to this position, persons who do not want to know details about their genetic make-up deliberately obscure things about themselves that affect their exercise of virtue. By this, they become less capable of shaping their moral agency.

Certainly, based on the test result a person may be able to adjust life-plans and life-expectations, to take some health care measures, to prepare the family-members for the future, or to make some financial preparations. Aspects like these may clearly be very important for the overall organisation of life. However, genetic testing may also have more indirect implications on a person's life-style and the way he or she sees him- or herself. To what extent does this kind of genetic self-knowledge influence a person's freedom at a deeper, more personal level?

The way a young woman at risk of Huntington's disease (HD) argued for her decision not to use predictive testing has been quoted in an article written by Kimberly Quaid (Quaid, 1994, p. 10):

1 decided that since I was in my midtwenties there was too long a gap between knowing and onset. I was not certain I could lead a full or productive life with the knowledge that I would develop HD. [...] There is no treatment or cure for HD. What good would it do me to know now? There was nothing I could do to change the inevitable one way or the other. Would I really modify my behaviour or lead my life any differently? A yes answer to that question would surely nullify the meaning of my present life.

This example shows that it is not only the amount of information available that matters in this context. Instead, genetic knowledge and decision-making have to be considered within a complex system in which a person's individual history, values, life-style and sense of integrity also play an important role.

Genetic information may provide the chance for living a more informed life—this chance should not be neglected. There is a considerable danger, however, that a person will adjust his or her whole life to this kind of information and to the purported future threat that goes along with it. In fixing this seemingly inevitable future personal fate not only may the value of the present reality be lost, but also projects done in the past, which before testing the person has considered as being worth aiming at, may present themselves in another context after the test.

In theoretical discussions on the importance of genetic knowledge it is often asumed that on the basis of genetic information autonomous persons will automatically be able to rationally choose what is best for them. Genetic knowledge is considered to be empowering. However, it is often forgotten that genetic information may also lead to severe psychological effects which clearly negatively influence a person's ability to engage in free and rational decision-making. With regard to genetic testing, information clearly is not the only aspect that matters.

I would like to draw your attention to David Hume who held that it is not only reason but also a person's sentiments which play an important role in pursuing one's goals. While the sentiments, affections, or desires set an agent's goals, with the help of adequate information reason pursues these goals as efficiently as possible (Lindley, 1986). According to this point of view, a person who chooses not to undergo genetic testing can be considered to exert self-government on the basis of his or her desire not to know. A choice like this is not derived from false beliefs: it is not an irrational one. Also, a decision that is made without knowing genetic information need not be irrational since decision-making done in this way can be considered the rational pursuit of the choice to live without genetic knowledge. The fact that someone lives according to a life-plan which is not based on the concept of genetic self-knowledge does not necessarily imply that it is irrational to live according to this life-plan.

Pregnancy Guide

Pregnancy Guide

A Beginner's Guide to Healthy Pregnancy. If you suspect, or know, that you are pregnant, we ho pe you have already visited your doctor. Presuming that you have confirmed your suspicions and that this is your first child, or that you wish to take better care of yourself d uring pregnancy than you did during your other pregnancies; you have come to the right place.

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