Prenatal testing and disability rights: decrying the medical model to tackle discrimination

Imagine living in a world where your very conception, and of those like you, was the cause of immense sorrow and sadness. Imagine that the thought of your existence elicited such a powerful emotive response that it rendered the idea of ‘choice’ illusory in deciding whether to have selective abortion.

For many years I have recognised the tension between prenatal testing and disability rights. I will be honest in saying that for much of this time I have intuitively felt uneasy at the predictability of selective abortions. I have dwelled on these feelings and I cannot really rationalise them in an obvious and clear way. Sure, a moderately influential Roman Catholic upbringing probably played a part, but I give little credence to the idea that religious doctrine alone has influenced my intellectual agency without being corrected by logic and reason. I think the answer, and my truth, simply rests on my strong-willed understanding that we can never ascribe true and real value to the existence of a human being.

It is easier to conceptualise the key advantage of prenatal testing — viz., diagnosis allows a parent to avoid the distress that would otherwise result in having a child with a serious disability. Because it is uncontentious to say that a disability presents a unique set of challenges, it is equally undemanding to run wildly with your personal recollections, understandings and projections. We imagine the family at Pizza Express, with a disruptively loud child and flustered mother, who is left with the constant battle of securing social access for their child whilst simultaneously limiting the disruption to able-bodied sensibilities. Whilst modern society is certainly capable of recognising the existence of some benefit to disabled life, it is far outbalanced by our ability to picture the disbenefit. I suspect that the above applies for most, save the 3% — 5% of families with a disabled child, who thereafter have the benefit of experience. I cannot speak for them all, but I can speak for my own. We have been blessed with a wonderful person, who simply happens to have a genetic disorder, which as a matter of national policy is a frequent subject of pre-natal testing. Perhaps unsurprisingly, It is therefore dispiriting to reflect upon the reality that she falls part of the 8% of persons given the opportunity to live following a positive pre-natal diagnosis.

I think at this point it is useful to set out my view in simple terms: I believe that prenatal testing to select against disabling traits is injurious to those living with those traits. I also maintain it is equally harmful to the construction of understanding which we assign to living with a disability. As I alluded to above, there are undeniable substantive differences to having a disabled child; differences we readily accept as burdensome and problematic. However, surrendering to the medical model that provides pre-natal screening reinforces the latent understanding that disability in and of itself, rather than social discrimination, is the problem. From personal experience, I have witnessed members of my family compromise on nearly every aspect of their life, be it holidays or jobs, whilst simultaneously fighting in the never-ending war on disability inclusion. I recognise the very real sense of this burden, which is often a determining factor for many who opt for selective abortion. However, I think as a society we need to recognise that the problems are not physiological in nature and instead reflect an unwillingness to alter our able-bodied infrastructure to genuinely include rather than simply entertain divergent individuals.

I do not wish to undermine the torturous thought processes for many women who find themselves pregnant with a child with a predicted disability. It would be arrogant and conceited to condemn anyone for the undeniably difficult choice they have to make. However, I am a little troubled by the absence of a conversation surrounding the reasoning for such decisions. For instance, research conducted by New England Journal of Medicine tells us that most selective abortions are mediated on the assumption that any child with severely disabled trait would necessarily be a lifelong burden to the family and the state. Although this is not surprising it is unsettling, partly I think because this imagined reality reflects a distorted view for many with disabling traits. I appreciate my anecdotal experience offers little to substantiate this, however, a body of research is emerging that demonstrates that aggregate patterns of overall adjustment and well-being is somewhat similar across groups of families with children with or without disabilities. Moreover, a significant number of families with disabled children report multifarious benefits and positive outcomes associated with and almost certainly attributable to their parenting experience. This includes but is not limited to adaptability, family harmony, cohesiveness, spiritual growth, shared parental roles and communication. Perhaps, most powerful is the fact that researchers have finally overcome the disbelief that the benefits are a priori attributable to the disability itself.

I don’t doubt that the experiences for many will vary depending on the type of disability in question. And certainly, this analysis doesn’t extend to families who make decisions in order to limit severe physical pain and sickness (for an entirely separate set of ethical considerations arise in those circumstances). But I think for some types of disabilities there is certainly scope for a conversation on whether pre-natal diagnoses should be sought at all. Although I have a personal idea of the types of disabilities that should fall on either side of the threshold, I will not list them here. I lack sufficient experience to stand confidently as any type of authority. However, I will note that my ideas are influenced by research that demonstrates that positive experiences are less mediated by family structure, or the level of disability, be it cognitive or physical, but rather by other factors such as the presence or absence of self-injurious behaviour, social and financial support, and challenging behaviour. Whatever this means to anyone, I should also note that I wholly support the idea that the best arbiter of which pathological traits should be pre-natally diagnosed and thereafter selectively aborted, is the mother. I just seek to challenge the stale narrative that is impliedly and expressly communicated to the parental stakeholders.

Without any doubt, the biggest irreconcilable disagreements in disability rhetoric pivot on the question of what being disabled is really like. Setting this debate aside, there is something appallingly disconcerting about the way this question is asked and the responses it elicits. The medical model subsumes within its understanding the assumption that some disabilities impose real life limitations which cannot be overcome through social evolution of culture, structure and institutions. Whilst this is not an assumption I vehemently reject, I resent the implication that it renders any disabled child ‘disvaluable’. The computation of benefit:burden in reference to a prospective child is to me somewhat arbitrary and morally repugnant. The calculation rests on the implied understanding that human activity and productivity orders humanity, and many disabilities necessarily place a person below an accepted threshold. I believe ignorance of disability causes many families to make a calculated but a misinformed decision based on the idea that a disabled child will not be what they so desperately desire — a being that will enrich and bring joy to their life. Ignorance of disability is a foundational source of disability discrimination and the patterns of pre-natal testing only reflect and reinforce pervasive views of disabilities in modern society.

From a bioethical perspective pre-natal diagnostic testing imposes duel obligations — to the fetus and to the mother. The benefit to the mother is obvious, but testing seldom leads to treatment beneficial to the fetus. Im not inferring an extensive amount of meaning from this but I think it is important to recognise this dual obligation. The obligation to the fetus exists, not for any religious or moral considerations, but rather because there are diagnostic and therapeutic procedures undertaken to improve fetal health (e.g. prenatal therapy for fetal anemia). In express words, a fetus can be viewed as a patient in its own right, a patient whom the practitioner owes a duty of care. However, this is not to say that the ‘fetal patient’ is a patient in the same sense that a pregnant woman is. They are distinguished by notions of autonomy, and I still maintain that a women should have ultimate control over their body. But, this commentary focuses on selective abortion — or alternatively, termination undertaken specifically because of fetal abnormality. The professional ethics of medicine broadly prohibits the active killing of patients. From a legal perspective the practitioner owes all patients a duty of non-malfeasance — or, a duty to inflict the least amount of harm as possible. This is relevant and interesting to me because it seems uncontentious that preventing a postnatal life of a fetus with Down syndrome or Ullrich-Turner syndrome, for example, falls conformingly within the parameters of duty. To me, implied within that conceptualisation is the recognition that a disabled life is ultimately one that is disvaluable.

The medical model also champions the notion that pre-natal testing enhances reproductive choice for mothers. However, I want to challenge this, even if only from an abstract perspective. Does amniocentesis offer mothers greater control or does it give them debilitating responsibility? Concerns have long been voiced on whether women have a sense of real autonomy over decisions made about their pregnancy. For example, one study I looked at reported that 75% of women undergoing amniocentesis sampling found it impossible to refrain from a diagnostic study once offered. Similarly, many reported that they felt “an obligation” to have testing done. If women perceive foregoing prenatal testing as ‘irresponsible parenting’ it has implications for their autonomy. Similarly, a mother who anticipates she will receive less support for forgoing screening and subsequently having a disabled child, is in fact subjected to pressures that compromise on her autonomy . Whether we like it or not, these decisions are rarely made privately, and reference is always made to a nexus of intervening factors (i.e. health care cover etc).

At present, I cannot envisage, nor I would I like see a significant change to health care practice on the matter. But, I would like to institute a conversation that challenges the status quo. I would also like see reform into how you communicate prenatal screening information. The reality is that most health care professionals are not adequately, if at all, trained in appropriate counselling technique. The days of the excessively sympathetic and crying nurse are sadly not a thing of the past. Counselling services need to include evidence-based information on the non-clinical implications of test results, avoiding unnecessary representations of morbidity and necessarily negative projections. It is, of course, essential that this practice prioritises the women’s personal choices and values, whilst also maintaining unbiased and non-directive consequential assumptions. Nevertheless, the social consequences should not be assumed where they are not known.

Ultimately, the real challenge falls within society where the perceptions of what it means to be disabled brew and take life. Where disability prejudice and discrimination reigns within us all. I truly believe that the emotional response to having a disabled child is socially constructed rather than being caused by any innate human response. At present, I cannot foretell a world where disability equality ever exists if we continue to legitimise value-laden assumptions over the worth of a human being. Disability brings grief and anger beyond belief. But it also bring love, beauty and affection — all of which are inherently incapable of evaluation.