The Right to Ignore

Goals and aims of antenatal diagnosis

by Friedemann Pannen

In its joint statement "How much knowledge does us good? Risks and opportunities of predictive medicine" the Evangelical Church in Germany (EKD) and the German Bishops’ Conference assert the "right to ignorance". Using antenatal diagnosis as an example, the author discusses various aspects of this legal principle and its significance for the discussion from a medico-ethical point of view. - The author is a pastor of the Evangelical-Lutheran Church of Hannover and theological secretary in the office of this church.

Should everything that is technically possible be allowed in modern medicine? That’s the big question most contributors to the medico-ethical debate asked themselves until recently. But if you address ethical issues in the field of antenatal diagnosis, and in predictive medicine at large, you realise that knowledge itself already often has an ethical significance. So the fundamental question must be: Should we know all that we can know? Isn’t there a "right to ignorance"? Shouldn’t "ignorance" be an ethically justifiable demand in the context of antenatal diagnosis?

Critics, who - like Hildburg Wegener - object that the church statement is for the most part compatible with the approach behind the development and application of antenatal diagnosis, should be reminded that antenatal diagnosis also helps prevent abortions. In fact, data from the German Statistics Office show that the number of registered abortions admitted due to embryo defects was down from 4.3 per cent in 1977 to 0.8 per cent in 1994. This is an achievement of modern medicine. If you take a blind negative stance to technical possibilities instead of looking at the effects and applications, you misjudge the benefits and opportunities of medical progress. Church arguments

Other critics - like Christian Geyer and Gerhard Besier - feel that the "right to ignorance" heralded by the churches is rather controversial in the context of an ethical assessment of antenatal diagnosis. The demand is either seen as an encroachment on a democratic social order and on human striving for emancipation or as an inadequate ethical argument for raising awareness.

If you read the joint statement carefully, it will strike you that the criticism focuses on one term that is only used twice. In both cases the "right to ignorance" is expressly demanded in connection with predictive medicine. Both sections of the text deal not so much with antenatal diagnosis but rather with the handling of individual genetic data.

The churches start with the observation that antenatal diagnosis methods first need to be assessed from an ethically neutral point of view. Thus they describe the opportunities offered by these medical techniques. If you want to judge antenatal diagnosis, you need to start with the effects of this technique. The ethical quality of a medical method can only be determined by looking at the goal and intention of its application.

The churches see the main risks and dangers of antenatal diagnosis in the fact that it encourages eugenic tendencies, diminishes the acceptance of disabled people in our society, and is used for purposes that are not medically justified. Therefore, the churches demand that antenatal diagnosis always be offered along with extensive counselling for the couples, which should set in before the method is applied and not just when the couple receive "bad news". Antenatal diagnosis "should therefore only be implemented for medical reasons". So it is ethically justifiable to do without antenatal diagnosis. Raising ethical awareness and sharpening the conscience must contribute to a "positive attitude to the sick and disabled in our society".

So what we should remember is, firstly, that the churches primarily demand the "right to ignorance" in the context of predictive medicine, and derived from this in antenatal diagnosis, too. In both parts of the text that expressly mention the "right to ignorance", the churches are concerned about a recording of individual genetic data and the protection of privacy.

Secondly, the churches expressly see the "right to ignorance" as a factor that boosts the right of self-determination. Women or couples who assert their "right to ignorance" should be encouraged in their freedom to make this decision. The "right to ignorance" as demanded by the churches is inherently of an emancipatory nature.

But what does this "right to ignorance" mean? Hans Jonas was probably the first to claim such a right. Jonas subjects human cloning to "existential criticism". He does not justify his rejection with a "concealed, only presumed, pre-existential right to physical diversity ... but to a very obvious, inherently existential right to ignorance which is denied to those who must know they are the copy of another." Jonas feels that the freedom of the individual is at stake, if he has to understand himself as the clone of another, for individual freedom can only "thrive under the protection of ignorance". The cloned human being is deprived of spontaneity and an open mind. Cloning allows the past to "anticipate the future with an unreal knowledge of it in the most intimate of all spheres, the question: Who am I? This question must originate in mystery and can only be answered, if the search for it remains veiled by mystery."

What Jonas writes in view of human cloning also serves as a convincing argument for our question. Of course, it’s not about copying a whole genotype, about deliberately creating genetically identical human beings. However, predictive medicine is about the predictability of genetic features or diseases of a human being. It’s obvious that the results of human genetic examination methods can restrict human spontaneity and freedom considerably. The demand for a "right to ignorance" serves to protect individual freedom.

Autonomy of the patient

To define the scope of a "right to ignorance" we need to make the following distinctions.

Firstly: People need to be encouraged in asserting their "right to ignorance" regarding their own genetic data. For this purpose, one can only agree with the statement of the two churches. We must set limits to science and delineate a field "that grants the individual a right to ignorance".
Secondly: With regard to (genetic) data or the diagnosis of diseases in patients who are unable to consent - this includes unborn life - we can only speak of a "right to ignorance", if the individual is forced to undergo diagnostic procedures without any recognisable medical justification. If society or economic constraints in the health sector put pressure on women to undergo antenatal diagnostic testing, we must reinforce the "right to ignorance".
Thirdly: However, if there is medically justified evidence, e.g. ultrasonic scan results, the demand for a "right to ignorance" is not ethically justified. Especially, if an abortion is considered because of the initial evidence. People who want to make responsible decisions regarding the right to life of others, who are unable to consent, should not only, in my mind, have no "right to ignorance", but should rather be obliged to know all the available information and make an ethically responsible decision, taking account of all circumstances.

What goes for organ transplants or intensive medical care at the end of life should go for the beginning of life, too. If a specific antenatal diagnosis confirms or rules out the justified suspicion of a hereditary disease, a couple in a pregnancy-related conflict should have the moral duty to know and take account of all the available data before making their decision. In this case, you can’t invoke a "right to ignorance".

Again Hans Jonas: "It has always been a well-known fact that there can be and often is too little knowledge. Suddenly there is a glaring spotlight on the fact that there can also be too much knowledge." The biblical tradition knows of an demarcated and unavailable space. Moses is reminded not to draw nigh "for the place whereon thou standest is holy ground" (Exodus 3,5). Genesis tells us a mythological story of the forbidden fruit of the tree of "knowledge of good and evil" (Genesis 2,9). Finally Paul rejects gnostic tendencies, claiming that human knowledge is only fragmentary. "For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known." (1 Corinthians 13, 12).

Human life is and always will be a mystery. A mystery that unfolds face to face with God, its creator. Medical technology with its access to human life is in danger of denying the mysterious nature of human life. Against this we must demand a "right to ignorance". With Jonas, we can formulate the following moral precept: Respect the right of every human life to find its own way and to surprise itself.

Reprint from »Lutherische Monatshefte«, no 11/1997, abridged and translated for publication in this magazine.

The Right to Ignore

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