Pre-natal screening, testing and choice: Some Misconceptions About Disability

Prenatal screening, testing and choice: Misconceptions about Disability

Misconceptions of Disability – prenatal testing and choice

Introduction

The language of impairment and disability that clinicians use influences the way we talk and think about disability .   Terms like ‘genetic abnormality’, ‘retardation’ and ‘chromosome problem’ are valid in a medical and scientific sense, but they can also be  loaded and emotive when used in a discussion about whether  or not to terminate a pregnancy.   A medical practitioner might say, for example, “Your foetus has a genetic abnormality, so it may have intellectual impairment, a range of medical problems and a shortened life expectancy” and prospective parents may be dismayed by this news, yet the same medical practitioner could also say, “Your child may  have a good life and she or he may be happy, loved and healthy regardless of genetic makeup”.

First trimester screening for Down Syndrome increasingly is accurate, and in hospital and medical information, first trimester screening often is an opportunity to inform parents about potential problems that may arise during the pregnancy.  For women who choose abortion, it is a way, later, to reduce complications,[1] and by that standard, first trimester screening is successful, because few foetuses detected with Down Syndrome in that trimester will be born.

Hospital literature explains the test as ‘risk-reducing’, a way to ensure that women experience no ‘harmful effects’ from reproduction, as if the birth of a child with Down syndrome is something that is undesirable, a “harmful effect” of pregnancy.  Just like tests for sex or eye colour, prenatal tests[2] for Down Syndrome are less medical procedures about health than they are procedures to identify potentially unwanted foetal characteristics, and although testing may be sought to guide the management of delivery and labour, its primary purpose is to provide foetal information so that the woman can decide whether or not to continue with the pregnancy.

Different choices

Women have a right to choose to end a pregnancy; a moral right to decide what to do with their bodies, but to say that prenatal testing and any resulting abortion are not medical procedures does not mean that the practice or motivation is uncontroversial.    A pregnancy test for a minor who has been raped and who does not want a child is not a medical procedure either, and nor is the abortion that may follow.

The test and any subsequent abortion are justifiable, and a doctor is the appropriate agent to carry them out, but that does not mean they serve to protect or restore the patient’s health.  If doctors properly can perform a non-healing intervention in aborting an unwanted foetus, should the same ethical reasoning apply to enable parents to prevent the birth of a child with Down syndrome?    The answer will depend on whether there is a distinct justification for the intervention that is not based on protecting or restoring the health of individual patients.

Testing mythology: Public health

Two reasons are commonly given for prenatal testing.  The first is public health; the second, enhancement of parental autonomy.   The public health goal is to reduce the incidence of genetic disease and defects.     Prenatal tests prevent disease and disabilities because they are a first step in preventing the existence of people with them.

Prevention by prenatal screening lacks one of the common justifications for public health measures: the prevention of medical harm to existing people.   It may be reasonable to treat the incidence of disability among existing people as, in part, a public health problem.  It is problematic to treat the existence of future people with disabilities that way.

Tax-payer funded screening appears to reflect a judgement that lives with those screened-for conditions are burdensome  –   to the child, their family and to society  –  and  to the extent  that to avoid them is a health care priority.  It is judgement that exaggerates and misattributes many of the difficulties associated with those conditions, because the principal difficulties faced by people with disabilities and their families stem from discriminatory attitudes and practices, and the remedy is social, legal, and institutional change that we can achieve in the same way we combat discrimination against Indigenous or transgendered people: through legislative and social reform.   Condoning the selection of embryos and fetuses with disabling traits perpetuates the misconception that the problem is the disability rather than a society that could do so much more to welcome and include all its members.

Parental autonomy

The second reason offered in support of prenatal screening is enhancement of parental autonomy.   The justification for enabling a woman to decide whether to have a child surely is stronger than the justification for enabling her to decide what kind of child she will have.

Pregnancy makes demands on a woman’s body, and parenthood involves an enormous, open-ended commitment.  To treat the choice between having a disabled or a non-disabled child as one that is of a similar magnitude to the difference between having and not having a child at all exaggerates the burden of disability and ignores the social sources of so much of that burden.

People with disabilities and their families face difficulties in our present society, and perhaps some of those difficulties would remain even after comprehensive social reform.   Few disabilities are so undesirable that they provide good reason for abandoning a parental project all together: for declining to become a parent to the child who would develop from the diagnosed fetus.    Given the difficulties that a disabled child is likely to face in our present society, a prospective parent may have good reason not to cause disability, but that is not reason enough to select against a fetus with a disability.   The ideal of unconditional welcome is one that is opposed to the exercise of selectivity through prenatal testing.

If a child develops a disease or a disability such as diabetes or acquired brain injury (most disabilities are caused by accidents or disease, not by genetic variations) loving parents incorporate the challenges into the way they raise and nurture that child.   Society does not condone the rejection of those challenges.

If, on the other hand, we accept the use of biomedical technology to give parents greater choice in the kind of children they have, how could we justifiably limit that choice to the avoidance of genetic impairment?   To be consistent, we must permit testing for any conditions parents might find burdensome or desirable, such as gender, sexuality, eye-colour, height, skin color or intelligence.  Even if we are comfortable with such parental selectivity, enhancing it should not enjoy the priority given to measures that protect the choice about whether to become a parent in the first place.

Conclusion

If we object to unfettered choice as a corruption or debasement of the parental role, we should not make an exception for disability.   To do so is to treat disabilities as uniquely burdensome, in the face of contrary evidence from research on families with children with disabilities.[3]   To assume that most genetically detectable disabilities impair the prospects for individual and family flourishing in a way that other potentially detectable characteristics do not is to stigmatize disability.   Such stigmatization may be understandable when it is displayed by anxious couples awaiting a life-transforming event, but it should not guide the public funding of reproductive research or the formulation of reproductive policy.

Given the difficulties in justifying the public funding of research and development in prenatal screening, the money spent for that purpose might be better used for research on improving the health, functioning, and longevity of children with genetically based impairments.

[1] See, for example, Mater Mothers’ Hospital. 2016.  Pregnancy—testing for Down Syndrome and other chromosome abnormalities –   Information for expectant parents. <http://brochures.mater.org.au/brochures/mater-mothers-hospital/pregnancy%E2%80%94testing-for-down-syndrome-and-other-chro>

[2]  Prenatal diagnosis may be conducted, for example, via amniocentesis, chorionic villus sampling, or preimplantation genetic diagnosis (PGD).

[3] For example, C Baxter et al. 1995.  A longitudinal study of parental stress and support: from diagnosis of disability to leaving school in International Journal of Disability, Development, and Education;42:125-136.

P Ferguson. 2001. “Mapping the family: disability studies and the exploration of parental response to disability” in G Albrecht, K Seelman and M Bury. 2001. Handbook of Disability Studies. Thousand Oaks, Calif: Sage Publications.