A critique of arguments supporting disability avoidance

Abstract

Many prominent bioethicists argue that positive consequences follow from avoiding disability in offspring by preconceptual, preimplantation or prenatal means. This paper critiques two variants of these positions: ‘Open future’ arguments that avoiding disability is in the interest of the persons who will be affected by it if born and ‘non‐person‐affecting’ claims that failures to avoid disability in offspring are wrong for reasons independent of their effect on affected offspring. Difficulties with both person‐affecting and non‐person‐affecting accounts are discussed in support of the charge that these arguments do not show that positive consequences follow from disability avoidance.

Keywords:

• disability
• prenatal diagnosis

Notes

1. I acknowledge that self‐determination is one of many lenses used to view this issue. My aim here is not to defend this approach but to critically examine some strong arguments employing it.

2. It is important to note that such parental wishes are both based on parent’s core belief systems and often made in view of bloodless surgical alternatives.

3. This does not mean that no harm can be done that is not directly a harm to a person. Disability avoidance remains instrumentally significant to parents’ choices and structuring of their lifeplans. Further, respect for parents’ self‐determination extends to respect of their known capable wishes about the treatment of their body, property and projects post‐mortem.

4. Again, as my concern is disability avoidance, I will not discuss therapeutic measures. However, analysis of therapeutic practices should acknowledge that they are a very limited response to dysfunction given the range of individual abilities throughout the human lifespan.

5. This is not to say that the intrinsic properties of the offspring are irrelevant, but rather to place them in the context of evaluation within a relationship. Indeed, some foetuses will possess conditions like anencephaly that will deny them the capacity necessary to ever possess a rational concern for their own survival. These circumstances, and the lack of intrinsic moral status they generate, could be a significant consideration in parental decision‐making. Further, this provides the basis for distinguishing between disabilities (dysfunction resulting from, or interaction between, body, person and social level factors on the continuum of the human lifespan) and serous impairments/conditions that prevent us from identifying moral agents as experiencing such dysfunction.

6. My thanks to an anonymous reviewer for raising this issue.

7. One’s position on whether there is a distinction between actions and omissions affects whether they distinguish between pursuing and failing to avoid disability in offspring.

8. Some might argue that in the terms of the ‘unbalanced motivations’ argument pursuing offspring with traits or conditions associated with disability runs afoul of respecting a child as an end in himself/herself, while not avoiding such traits either does not or does so to a lesser extent. This distinction might be grounded in the acts/omissions distinction. Yet, if parents’ motivations for having children are indeed insufficiently attentive to these children as ends in themselves, and these children are brought into the world, I simply do not share the intuition that cases where this outcome is produced by selection of traits or conditions associated with disability are more suspect than those where disability is diagnosed but parents omit to avoid offspring so affected. Omitting or choosing to avoid diagnosed conditions or traits in the foetus can equally reflect a caring approach to the maternal–fetal relationship.

9. Although some women lack the capacity for reproduction, this only serves to strengthen the point: their awareness of this often shapes their identity and worldview to a considerable degree (see, for example, Chester 2003).

10. Alternatively, in rearing children parents might wish to secure a relationship with a child whose traits complement their own. For example, some parents’ experience of their own traits as limiting to their projects and relationships may lead them to desire a relationship in which they can better aid their children in negotiating these limitations, and in so doing provide their children with options that may be meaningful to them.

11. Research by Davis et al. (1995) suggests that ‘mothers of non‐surviving children with birth defects compensate by acting to “replace” the lost child’. However, here the children in question were brought to term, not foetuses subject to termination of pregnancy. Nevertheless, other research concerning the impact of termination of pregnancy on later fertility reveals some data that can be employed to assess whether women typically attempt to conceive again after termination of pregnancy for the purposes of disability avoidance. For example, the follow‐up study by Lurie et al. (1994) of women who utilized mid‐trimester termination of pregnancy 4–5 years previously found that 21.9% (14/46) did not wish to subsequently conceive. A host of reasons could explain this finding, including a desire not to revisit the grief and guilt often following termination of pregnancy for the purposes of disability avoidance (see Lurie et al. 1994).