By Margaret Somerville
Editor’s note. October is Down Syndrome Awareness Month. Not so long ago, it seem, a Danish newspaper ran a story headlined, “Plans to make Denmark a Down syndrome-free perfect society.” Dr. Somerville’s article is in response to that appalling idea. She is the founding director of the Centre for Medicine, Ethics and Law at McGill University in Quebec.
According Danish news paper Berlingske, “Denmark has decided not listen to people who may complain of human selection and have put their foot on the ground to promote increased abortion of foetuses suspected of having Down syndrome.” As such, if progress continues at this rate, the last case to be born with the illness will be around the year 2030.
Aarhus University bioethicist, Niels Uldbjerg, “describes it as a “fantastic achievement” that the number of newborns with Down syndrome is approaching zero.” The report continues: “What’s next? Is the child born with diabetes…[to] be discarded?” asks Ulla Brendstrup, the mother of a child with Down syndrome.”
Lillian Bondo, a member of the Denmark Ethics Committee is, who is also chairman of the association of midwives, told Berlingske she “wants to help as many people as possible to discuss how society should draw the line. I do not want a society in which sorting by [testing] is the norm.”
At least the Danes are bringing this issue into the open and are being more honest about it than we are in Canada. The current estimates are that in North America over 90 percent of unborn babies with Down syndrome are aborted. Importantly, the Danes are also recognizing that “deselecting” Down syndrome children–or any other group who are likewise selected for elimination–raises issues for society and is not just a matter of private decision-making by individuals.
And this issue will only become more prevalent as prenatal tests for genetic and other conditions expand, become cheaper and easier to use, and are presented to pregnant women as routine precautions in medically managing a pregnancy.
Widespread, publicly endorsed and paid for pre-natal screening implicates among other values, those of respect for human life, both individual human life and human life in general ; respect for “disabled” (differently abled) people, both as individuals and as a group; and respect for the rights to autonomy and self-determination of pregnant woman. It also raises issues of the ethics of society’s support for and complicity in any breach of values involved, and, likewise, of medicine’s complicity in such breaches.
We cannot afford just to consider the impact of screening decisions at the level of individual decision-making; we must consider also the impact of these decisions as a collective reality, that is, as a cumulative whole. As harsh as the language is, we must ask ourselves, “Are we on a “search and destroy” mission to wipe out certain groups of people?” If we don’t want Down syndrome children, for example, in our society, what are our reasons and justifications? Are those reasons and justifications ethically acceptable?
We must also place this proposal in another wider context, that of no legal restrictions on abortion in Canada. Is it ethically acceptable to abort a Down syndrome child at eight months of gestation?
Are we implementing a new eugenics? To respond we need to take heed of history – to look back seven generations – to inform ourselves of the possible consequences of doing so, and use our imaginations to look forward seven generations to try to imagine where endorsing this screening might lead.
We have unprecedented new technoscience powers – history teaches us that the use of science in the search for human perfection has been at the root of some of our greatest atrocities in terms of respect for human life, individual humans and human rights.
We humans have always used a shared story to bind us together as a society. Norms and values are a central part of that story and in both creating and maintaining them, we have always focused on the two great events in every human life – birth and death. Consequently, when we change the norms and values surrounding birth, we change our societal norms and values, in general.
Offering prenatal screening as a routine procedure radically alters the basic presumption on which the traditional norm has been founded, that pregnancy results in the birth of a child, unless some natural events frustrate that outcome. It communicates a message that a woman is conditionally pregnant, until she is told there is “nothing wrong” with the baby. That is a major change from needing an ethical justification to end the pregnancy, to holding affirmation of the pregnancy in suspense until the fetus is certified as “normal”.
How does this approach impact on our concept of parental love – that it is unconditional – that we love our children just because they are our children? I suggest that it constitutes a condemnation of negative eugenics. And quite apart from the ethics of doing that, what does it mean in terms of approving and promoting positive eugenics, that is, genetically designing or enhancing our children? If parental love is conditional, will we only love them if they have certain positive traits that we have chosen?
And what about the “everyday ethics” involved in this situation? If, as has been proposed in Quebec, all pregnant women should be offered screening for Down syndrome, are all physicians competent to obtain informed consent to these tests and carry out follow up genetic counseling? The answer in many cases is “no”.
And what about physicians who have conscientious objections to offering such tests? What range of tests will be offered and how rapidly will this increase?
How will women who refuse screening be regarded? Some research shows they worry that physicians disapprove of their decision as unreasonable and that that will adversely affect the physician-patient relationship. The physician-patient relationship is also one of unequal power, which means it is difficult even for highly educated, confident patients, let alone the average person, to go against their physician’s recommendations. Those conditions, in themselves, create a climate of coercion not to refuse the screening.
What will be the impact on families who “choose” not to abort when “abnormalities” are discovered, that is, they “choose” to have a disabled child? Many of these people believe that they will be seen as socially irresponsible. That belief, in itself, creates a climate of coercion not to proceed with the pregnancy.
What will be the impact on people with disabilities of the same or similar nature to those screened for and the elimination of unborn children who have them?
The message, whether we like it or not, that we will be delivering at the societal level is that “We don’t want you in our society unless you measure up to a certain genetic or other standard. You are only a potential member, until you’ve passed the admission test that we are willing to pay for with our tax dollars and implement”.
The argument that only individual decision making is involved in carrying out pre-natal screening is disingenuous, even now, and will become impossible if screening were implemented as the norm. The unavoidable collective impact of these screening-based decisions is the resulting fact of implementing negative eugenics with respect to disabled people.
The conditions these tests screen for are not treatable; the only recourse that is possible or intended is to eliminate the fetus with them. Instead of being seen as a unique human, who never existed before and never will again (cloning aside), the child becomes replaceable: “We will get rid of this one and try again”. Societally approved and supported screening endorses that mindset.
There is a radical difference ethically and in the values upheld or breached, between screening as an exceptional intervention that needs ethical justification and screening as a normalized routine intervention.
And so far I haven’t mentioned the ethical issues raised by the tests themselves, for instance, false positive results and, often, difficulties in their interpretation, and the crude nature of our predictive abilities as to what certain identified “abnormalities” mean in terms of the person’s functioning. For many reasons, including defensive medicine (fear of legal liability) physicians on the whole err on the very pessimistic side in predicting the impact on the child of the abnormalities detected and usually see no possible benefits from having such a child – for instance, unless they themselves have a Down syndrome child, they can be astonished to learn of the joy, bonding and love such a child can bring to a family.
There is a truism “you can’t have it both ways” that is relevant here. The justification used to argue that prenatal screening is ethically acceptable is respect for the right to autonomy and self-determination of the pregnant woman and, sometimes in practice, those same rights of the father – that is, these are rights of the parents with respect to the characteristics of the children they are willing to rear as members of their family.
The same argument – that these are only decisions by individuals that they have a right to make – is used to refute the argument that these decisions, at least cumulatively, constitute a new 21st Century eugenics. The introduction of routine, widespread screening approved by society and supported by taxpayers dollars makes this argument – whether or not one accepts it, which I do not – completely untenable, which means such an approach to screening should be ethically unacceptable to everyone.