Reflections on Pre-implantation genetic diagnosis

by Erika Vögeli

We are faced with a complex question when we are called to the ballot box on 14 June in order to decide on the submission regarding pre-implantation genetic diagnosis. Specifically this involves the amendment of Article 119 of the Federal Constitution, so that genetic testing – the so-called pre-implantation genetic diagnosis (PGD) – can be carried out in embryos produced in vitro. The PGD shall be allowed in the Reproductive Medicine Act. The original proposal of the Federal Council wanted to allow PGD only for those sets of parents who are aware of the risk of passing on a serious genetic disease. In order not to abandon the wish for a child from the outset, PGD should allow to exclude a possible inheritance of such diseases.
The process as such already raises a number of ethical questions. With the new wording of the law by a parliamentary majority, these questions are raised anew and in quite a different urgency. Each of the embryos artificially produced should be tested for inherited diseases and supernumerary or missing chromosomes by the “Preimplantation Genetic Screening”. And upon acceptance of the amended Constitution article it would allow that “as many human egg cells can be developed into embryos outside the body of the woman than are needed for medically assisted reproduction.” (BV Art. 119 para. 2 c) What does that mean? Why this vague extension and disconnection of women and pregnancy? Today, the embryo may be protected even before it is implanted in the uterus. How much longer? And what lies ahead?
The discussion about human breeding in the sense of genetic selection has already been launched in our media (see “Only the best for the offspring”, Neue Zürcher Zeitung of 17 April 2015). In the 1930’s, this was referred to as eugenics – the term raises appalling memories of master race selection. That is why the discussion of “technological enhancement” travels under the label “trans-humanism” today. In essence, nothing has changed, though: Authorized by reason and science an obligation to progress is postulated which supposedly includes an “enhancement” of human nature by technological means, towards the “post-humane” or “trans-humane”. But who will show the direction? Which “humankind” should we aim for? Who will define what real “progress” is? Who aspires to design such an artificial “evolution”? Besides, after a world-wide hype about “Dolly” the cloned sheep, there is a silence today which is almost deafening. Despite billions of investment not a single method of so-called gene therapy has materialized as routine medical practice as yet. And also in the area of the Human Brain Project all new discoveries just deepen the conviction that there is so little we really know and understand. That means, of course, that we might go ahead and “make” something – but we would indeed not be able to foresee the consequences of such interference with nature. (cf. box)
With due respect for the capabilities of scientific knowledge and technological developments, neither the creation of the cosmos, of our planet, nor life and the “design” of human nature is what we are in charge of with our human tasks and skills. It goes without saying that medical research, for instance, has achieved real blessings for us, without which many of us or our nearest and dearest and many more people on earth would not be with us any longer or would have to endure severe hardships. Medicine has made our lives easier, may offer healing where there used to be hopelessness and ease pain and suffering that used to be unbearable. We are all grateful for that. But suffering, disease and impaired range of activities will never be completely avoidable, they belong to our lives and have to be faced by everybody in one way or another at some point. Therefore we have to consider not only what is practically feasible, but also what all these discussions of Human Enhancement are doing to us – to the way we view life and humankind in its eternal and inevitable imperfection.
It is rarely articulated in that debate that things in the genomic field are obviously not as easy as we had hoped for a couple of years ago. For a start, there are not just genes to be found in the genome and to explain and make available all phenotypic properties. And it is not enough considered what various researchers have recently contributed from the perspective of epigenics that genetic information may even change during lifetime due to the interplay of biological and social influences from the environment, challenging the certainty of some prognoses that had appeared rock solid.
From a psychological perspective one might add: Here experience shows, perhaps more clearly than anywhere else, that every human being communicates and interconnects with society from the first day of his or her life, developing a unique, distinctive personality in the process. Equal as all humans may be in principle, this simple fact challenges every attempt to explain character and personality traits – including intelligence, for that matter – by genetic heredity alone. This does not mean that we cannot define optimal conditions for the promotion of a healthy physical, psycho-spiritual and social development. People have been searching for those as long as humankind has existed, and our generation benefits from the achievements and traditions of countless predecessors who contributed to this knowledge.
After all we can’t help being social, unable to survive without our fellow human ebeings and to fully develop our humanness disconnected from others. We are not just a pool of genes, designed as desired, and then automatically turning into the intended product. We are embedded into a stream of human history, part of a historical, cultural and social string – born and raised here and today in a specific humane context.
In order to explain and understand many diseases and patho-mechanisms these interactions have to be considered much more carefully. Our tunnel vision of focusing on genetic data alone has in fact distorted our views in many aspects over the recent years. Another remark: No Human Genome Project and No Human Enhancement will ever abolish the consequences of all those bombs and missiles, this radioactive dust they left behind which keeps spreading over the attacked countries – but is also traveling to us – and mayme disrupting the lives of people inhaling it with malignant (multiple) tumors, birth defects and other diseases due to DNA molecule fractures and other gene defects. Efforts have been made to quell the discussion of these problems for years and decades now. Nevertheless, it will surface one day.
Should “Human Enhancement” make any sense, it would be our effort to gain insight into our nature and direction of development towards more empathy, humaneness, justice and peace for all humankind, but certainly not the “ascension” of some individuals to a top position in their competition quarrels. All experience shows: Rather than by competition and selection, the most stable and sustainable successes are achieved by dialogue and cooperation, which open the gates for the contest of diversity.    •

“Despite considerable investments into the research of gene therapy from both the state and the private sector as well as the distribution of venture capital worth billions to countless biotech start-ups, so far, nothing therapeutically applicable could be developed.”
(p. 32)
“Where has the proclaimed genetic revolution gone”, wonders medical ethicist and philosopher Urban Wiesing as well in a Spiegel interview. “It was […] predicted that in 15 to 20 years the majority of medicine would be consisting of gene therapy. So far, however, to my knowledge, there is no study examining gene therapy with respect to its therapeutic usability or it’s broader applicability. In summary, the predictions resulting from the newest discoveries in the field of genetics were exceeding real-life developments by far.”(p. 32)
“One has no idea where to run, but does so even faster”. (p. 34)

Felix Hasler, Neuromythology Bielefeld 2012