BIOETHICS CASE: Can having children ever be immoral?

Knowledge of genetics introduces new ethical problems. In some cases, we may become aware of adverse consequences to which we were blinded before. Now we must decide whether we should conceive and bear children, knowing in advance that they have a good chance of having some genetically based disease.

Consider the dramatic (and perhaps extreme) case of someone who has Huntington's chorea. Early symptoms of the disease, beginning ages 30 to 50, include personality changes such as obstinacy, moodiness or lack of initiative. Later, the person has involuntary jerky movements that distort facial expressions, lead to explosive speech and to shuffling or dancing gaits. As the disease progresses, walking eventually becomes impossible, swallowing difficult, and mental impairment profound. Huntington's chorea is due to a dominant autosomal allele, so if your parent had the disease, there is a 50% chance that you carry the allele and a 50% chance that any of your children will have the disease. Should you now have children?

One basic issue is whether we have a responsiblity to provide every person with a "normal opportunity range." In this view, everyone deserves a chance for a "good life"--as reflected in our commitments to ensure equal opportunity in housing, employment or health care. In the case of genetic diseases, we might want to ensure freedom from (possible) disability, especially where there are no obvious balancing factors. What do we value: life itself or quality of life?

Another issue is whether persons who are not yet conceived have "rights." Here, one may distinguish between a potential person (such as a fetus, already developing) and a possible person (such as someone in a future generation, not yet conceived). Laura Purdy, for example, argues that we cannot harm someone who does not yet exist--but that we may harm them merely by bringing them into existence under some conditions.

Also, does someone have a "right" to reproduce? Would such a right be honored if it involved harming someone else? What motivates someone having children--and are there other alternatives? Does adopting an abandoned infant or refugee child from another country fulfill the same aims? Who are all the stakeholders, here? What are their motives and the consequences for each? Can having children ever reflect a parent's "selfish" motive? If we considered it inappropriate to have children in some cases, where would we draw the line? What if the chance of passing on the Huntington's chorea allele or some similar gene were only 1/3 or 1/4, or 1/10? --what if 100%?

What about less severe conditions, such as diabetes or predisposition for schizophrenia?

With the Human Genome Project, of course, we are identifying more and more cases of specific genetic deficiencies. Will our judgements change if different types of minor genetic conditions are so common that a majority of the population has one or another? How much do we feel we ought to control or shape nature? How do our choices now differ from those a century ago, when persons were aware of birth defects, but could not predict when they might occur?

Questions about genetic diseases often evoke images of eugenics. But one may also perhaps distinguish, here, between an effort to control and perfect a population, and our duties to individual persons to avert suffering or harm. Still, in both cases, there is a fundamental question of what we value, what we consider acceptable or intolerable, or how we cope with persons who do not conform to our view of what is "normal." Is there such a thing as a "normal" individual?

Finally, if we conclude that bearing a child with a genetic disease is unethical, can we (should we) enforce such a policy? If not, how might we ensure that everyone makes an informed choice? Does it matter if one makes the decision not to conceive a child, versus aborting a fetus after amniocentesis reveals a specific defect?

Students may tend to stop at the notion of personal choice and fail to see a real dilemma, here. In such cases, one would want to at least articulate and insist on incorporating the ethical principle of protecting the interests of all persons.


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