Why is eugenics considered unethical

Eugenics is seen as a word of abuse, shame and shame. At the International Genetics Congress in Beijing in August 1998, several participants recommended avoiding this word as much as possible when discussing the new human genetics, because it is burdened by bitter historical experiences. And the fact that the present book, which was originally published in 1996 under the title "The Lives to Come" in the USA and had caused considerable attention there, only recently came out in Germany with an unusual delay in the industry is allegedly due to the fact that no German publisher really dared to do the translation. The topic is simply too explosive in this country.

The creators of eugenics in England were free of such concerns over a hundred years ago. The idea of ​​promoting the multiplication of valuable people and preventing the worthless - however one intended to determine the value of a person - was the subject of public lectures and discussions in dignitaries' associations, trade union and church groups, in schools and universities USA far more than in Europe.

In the USA, ideas of eugenics were first implemented politically, for example through selective immigration laws and the forced sterilization of tens of thousands of "worthless" people. Those were all who did not fit into the pattern of good behavior, diligence, decency and cleanliness: those who were unwilling to work and who were shy of work, auxiliary students and welfare recipients, the mentally handicapped and the mentally ill, alcoholics and violent criminals. It was not until the mid-thirties that the insight gained acceptance, especially under the influence of prominent geneticists, that the relationship between genes and complex human forms of behavior is anything but simple, in many cases does not even exist, and that this is why the eugenics of the The door and gate opened arbitrarily.

That was the end of the old eugenics in the USA, but not in Germany during the Nazi era, where this ideology was used not only as a justification for forced sterilization, but also for the killing of sick people and for genocide. Eugenics had lost its innocence, perhaps never had it, and is now considered one of the deadly ideologies of the century.

However, an innocent type of eugenics continued to be practiced, albeit not by that name. A famous example is the containment of Tay-Sachs disease. The hereditary disease, to which children painfully fall victim in the first years of life, primarily affected Jewish people of Eastern European origin. Simple test procedures can be used to determine whether a person carries a damaged Tay-Sachs gene. If two of them decide to marry and have children, they are informed that prenatal diagnostics can reliably determine whether a fetus has inherited a damaged gene from both parents. In this case, the parents almost always decide to terminate the pregnancy, so that Tay-Sachs disease is very rare. The program was successful, also because community opinion leaders such as teachers and clergy supported it. The “Community Genetics” programs on the Mediterranean islands of Sardinia and Cyprus, where the hereditary disease thalassemia had previously found many victims, were equally successful.

Philip Kitcher now speaks of eugenics again in his book; even more: “Eugenics is inevitable” (page 363). The author is a philosopher who has studied genetics more than most in his field. Because he belongs to the group of non-biologists and non-medical professionals who accompany the American human genome project.

The aim of this project is to decipher the entire human genome. When it was first publicly discussed about ten years ago, it was clear to all those involved that it would surpass everything previously familiar in biology in terms of methodology, technology, organization and, above all, costs, but also that the results would be of inestimable value for the basic biological research and practical medicine. Today we already know several thousand human genes, including those that are responsible for most of the typical hereditary diseases. And all those familiar with the situation assume that sometime between 2003 and 2008 all hundred thousand human genes will be known, plus the long stretches of the intermediate genetic material.

From the beginning it was also clear that the results of the Human Genome Project would be of enormous importance for human society. The Americans, with their fondness for acronyms, speak of ELSI: ethical, legal, social issues. Part of the funds for the Human Genome Project will be used for ELSI; The book was created in this environment.

For non-specialists, the first chapter "Building blocks of life" is intended as an introduction to molecular genetics. But the remaining twelve chapters concern everyone who is interested in the future of medicine, in general, in the future of society in our western civilization.

Dozens of hereditary diseases can already be reliably diagnosed today, and "in 2020 tests [will] be available for hundreds, if not thousands of different diseases, ... but with just a few tests the diagnosis will go hand in hand with therapy." to agree with these statements by Kitchers. His questions are obvious: “Is the information, a by-product of the molecular biological revolution, worth knowing? Are the hundreds of tests seen as a relief or a burden? ”As a burden, because the results of gene tests put people under psychological stress long before the onset of the disease and they could be exploited by employers, insurance companies and authorities; or because prenatal examinations will reveal a hereditary disease in a fetus and parents then face the difficult decision for or against an abortion.

Kitcher is not afraid to speak of eugenics, albeit with the - unhappily chosen - attribute “utopian”; “Enlightened eugenics” or a completely different word might be better. But despite the objections to the choice of words, I support his plea for a cautious and intelligently controlled application of molecular genetic knowledge, even if this does not yet have any therapeutic consequences.

Utopian eugenics is an offer to everyone who seeks advice, regardless of income, educational level or ethnic background. Parents decide autonomously, on the basis of absolutely reliable information and after detailed, open-ended advice. You can, but do not have to, accept the offer of a prenatal diagnosis. If the test results are unfavorable, you can decide for or against terminating the pregnancy. Autonomy is probably the most important means against a resurrection of the old eugenics in the new world of molecular medicine.

Utopian eugenics also makes a demand on society: it must accept the autonomy of parents. If parents decide not to terminate the pregnancy, society must provide the means to care for and raise the hereditary child, just as if a child is born damaged by infections or complications during pregnancy and childbirth.

Philip Kitcher has thought through the consequences of present and future molecular human genetics more carefully and thoroughly than others before him, sometimes even too thoroughly according to my taste, because on quite a few pages one loses the red thread of the argument through too many and sometimes too far-fetched examples. But other readers may find that it makes the book more lively or easier to read. In my estimation Kitcher wrote a standard work that no one interested in ELSI in the context of new genetics can ignore.

The diseases that the Human Genome Project is supposed to research include not only the so-called classic hereditary diseases, which are rare in themselves, but also common diseases such as diabetes, high blood pressure, arteriosclerosis, rheumatism and the major psychoses. Only when the causes including the genetic components are known can meaningful thinking about new therapeutic options begin. But historical examples teach patience: Robert Koch described the causative agent of tuberculosis in 1883, but it was only after 1950 that effective drugs came into the hands of doctors.

From: Spektrum der Wissenschaft 11/1999, page 112
© Spektrum der Wissenschaft Verlagsgesellschaft mbH

This article is contained in Spectrum of Science 11/1999