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Is there an individual responsibility not to have children in cases of genetic risk?

By Rachel Ankeny - posted Sunday, 15 October 2000

Some bioethicists have argued in favour of a position that many members of the general public would find obvious: in cases where there is a family history of risk for genetic disease, couples should refrain from having offspring. This goal of not creating children with genetic disease can be attained either through avoiding conception (especially if abortion is not an acceptable option), or using prenatal testing and selective abortion or pre-implantation screening of embryos created through in vitro fertilisation. The argument begins from the idea that we should try to provide every child with a ‘normal opportunity’ for health. For instance, the philosopher John Rawls, without specifically discussing health, has argued that such a normal range of opportunity could be negotiated through a form of deliberative democracy. If we also accept the premise that it is not wrong to prevent possible children from existing (since possible persons do not yet have the rights that we give actual persons), then it follows that our duty to provide a normal opportunity for health may require us to refrain from childbearing. However, this argument smuggles in a number of unacknowledged assumptions that are important to make explicit as our genetic technologies provide increased options and pressures for detection of risk for genetic disease.

First, what is a ‘normal opportunity’ for health? Who decides what counts as an adequate range of opportunities, and using what process? We are all aware that children are provided with widely varying amounts of ‘opportunities’. Some children attend prestigious grammar schools, take private music or riding lessons and go travelling for their cultural enrichment. Other children may learn work skills, be raised in a particular religious environment and live in a bilingual community. For one family, a diet must include meat products in order to be ‘healthy’ while for another family such a diet is a moral abomination or religiously prohibited. We allow and expect that many parents will choose not to or not be able to provide certain ‘opportunities’, but short of neglect and abuse, we grant parents a wide range of liberties with how they raise their children. Can it be argued that health is a different kind of thing?

On the surface, the obvious answer seems to be affirmative. After all, who would wish disease and suffering on her own child if they could be avoided? Furthermore, given the complications that life presents us with later, why not begin on as level a playing field as possible, particularly with regard to basic conditions such as health? These conclusions rely on a particular definition of quality of life, and one that is not likely to be accepted by everyone. For instance, consider congenital deafness. Although a hearing-impaired child is limited in a variety of ways, at least from the perspective of the hearing community, members of the deaf community and some bioethicists have argued that not being deaf also presents one with a variety of limitations, particularly when one’s family is part of that community. A hearing child is not able to fully participate in that community, and in many ways is psychologically and socially isolated. Similarly, although achondroplasia (hereditary dwarfism) may be disabling in various ways, for a couple who are themselves ‘little people’ (as they prefer to be called), it is physically difficult if not impossible to raise a normal-sized child. If we begin to recognize a richer notion of ‘quality of life’ beyond conventional definitions and acknowledge a continuum of ‘lives worth living’, we end up with a rather wide range of opportunities that might count as acceptable. But is there some sort of ‘lower limit’ on which we could all agree, or identify as a life not ‘worth living’?


The paradigm case often used for discussion of the range of ‘normal opportunity for health’ is Huntington disease (HD). Generally, Huntington disease is a late-onset, dominant genetic disorder (meaning that if one’s parent has HD, one has a 50% chance of having inherited the gene), which results in generalized neurological degeneration typically including characteristic choreic symptoms, eventuating in death. Contrary to many people’s understanding, a wide range of quality of life occurs: onset varies from youth to old age, typically with a corresponding decrease in extremity of the symptoms as one ages. Most individuals do develop the disease between age 40-50 (often after childbearing has occurred) but there is little uniformity of symptoms, progression and so on. No cure is available, and treatment is entirely symptomatic. Using this condition as a focal point, some bioethicists have argued that although it is clear that persons perceive risks differently (in this case the risk of transmitting the gene) and even have different, subjective attitudes toward disease conditions, it is possible to derive an ‘objective’ definition of suffering. For instance as Laura Purdy puts it, "for devastating diseases like Huntington’s chorea, this part of the judgment [i.e., about the gravity of the disease] should be unproblematic: no one could want a loved one to suffer so". Although she later admits that it is difficult to define the ‘right’ attitude to a particular risk or a particular disease condition, she also claims that there are "good grounds for arguing in favor of a conservative approach here". She calls for more empirical research on these diseases, the life histories of their sufferers, and so on, but indicates that "common sense suggests that the pessimist has the edge". My argument is that her claims depend both on a narrow understanding of this particular disease condition, let alone other disabling conditions, as well as a restrictively objective one, particularly given that she limits her argument to individual moral responsibility and is not making policy or societal claims.

What would a truly intersubjective approach to determining acceptable quality of life look like? Let’s return to HD for a moment. In the case of HD, individuals’ experiences of the disease differ dramatically. It is these individual family experiences (after all, individuals from families afflicted with a particular disease condition surely are experts about what to expect if one develops the condition) which should determine an individual’s sense of duties regarding childbearing and correspondingly how society could be structured to support families in such situations. Some would argue that nonetheless no one would want a loved one to suffer any of the conditions related to a disease such as HD, and surely that is almost certainly the case. However, given that potential parents have few other reproductive options (the adoption system in most countries uses a history of HD as a complete counterindication to adoption, and similarly candidacy for various in vitro fertilisation procedures), it can be argued that individual perceptions of the disease and quality of life should continue to ground individual decisionmaking and the scope of one’s duties, and social policies should allow for this. Note I am not claiming an unalienable right to genetically reproduce, let alone endorsing the idea that individuals need to be genetically related to their offspring, but I am suggesting that part of having a normal range of life opportunities includes raising a family, if they so wish, and therefore is an important determinant of what is a good life for many. This argument applies not only to those with late onset disorders, but particularly to those with genetically-based illnesses where the disease condition may form part of one’s identity (e.g., deafness) or pose particular physical limitations to the kind of child one could support within one’s household (e.g., achondroplasia, discussed above). In turn, societal conditions must be modified and not-so subtle social pressures exerted in order to allow people and families with genetic disease to have better qualities of life.

Therefore, these considerations point to use of an individually-focused approach, by asking people and emphasizing personal notions of responsibility (e.g, ethical theories that contextualize relationships and decision making). Such an approach would allow development of richer accounts of disease experience, adjustment to illness and so on. Recent literature suggests that there is less discordance between the public and affected individuals than was previously thought regarding the desirability (or lack thereof) of particular health states. This result seems to be a product of using less static definitions of disease, of allowing for development of a condition and adjustment to it. Many genetic diseases could be viewed in this way: although a family struggles at first, there is a gradual coming to terms with the new situation. Why not allow well-informed individuals to determine what counts as quality of life for them and their families, since they are the ones who will need to live their lives?

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These papers initially were presented at the 2000 Templeton workshop entitled "Measuring Quality of Human Life in the Context of Genetic Testing" co-sponsored by the Council on Human Aspects of Technology and the Unit for History and Philosophy of Science at the University of Sydney.

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About the Author

Rachel A Ankeny is Director of the Unit for History and Philosophy of Science at the University of Sydney, and lecturer in history and philosophy of biomedical sciences. She has worked in a variety of healthcare settings as a clinical bioethicist and has served on hospital ethics committees, as well as teaching on the faculties at University of Pittsburgh and Connecticut College in the United States.

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