In a few days’ time, a sensational scientific breakthrough will celebrate its 18th birthday, so to speak, and will thus have reached its majority, namely the decoding of the human genome. In February 2001, the Human Genome Project announced the publication of a draft sequence plus an initial analysis of the human genome. At the dawn of the new millennium, the first ever complete decoding of the human DNA was an absolute sensation. It was the temporary climax of research which until then had cost a whopping 2.7 billion US dollars. Today, a US-based company offers people full genome sequencing for a discount price of a mere one hundred dollars. Moreover, there is an increasing number of companies that are interested in buying genetic data for their own future research as well as for financial reasons.
Prof. Dr. Markus Nöthen, Director of the Institute of Human Genetics at the University of Bonn (Germany), claimed a few weeks ago at a conference devoted to molecular medicine and its ethical impacts in Paderborn (where I gave a lecture about ethical questions surrounding predictive medicine) that it would only take a few more years until we would all know our genome. He added that this would and should be nothing to worry about. The genetical society, in other words, is already on its way, or rather, on its high-way. In fact, one might even argue that we are only a few more steps away from the “geneticization” of society.
What will we do with our newly acquired knowledge of our genome? Or rather: What will our knowledge about our genome do with us? There is not enough room here to discuss the potential consequences of the fact that those who know our data can of course also misuse them. This is a separate topic that needs to be looked at elsewhere. Instead, I want to focus on the following issue: Many of us will become ‚healthy sick‘ people. Practically all of us have a genetic predisposition for one disease or another. But up until now, only a few of these diseases will probably have come to the surface and begun to affect our daily lives. So are we still healthy – or are we already sick but have simply not yet felt the full consequences of our dispositions?
The human genome reveals several risks for diseases that might break out in the future; and with our genome, we will also soon be provided with percentages about our specific risks. This will allow us to decide which measures of predictive medicine we might want to adopt. However, this also marks a paradigm shift from therapeutic to personalized medicine. And the next step is also already on the horizon: One day the CRISPR/Cas 9 method could even help to repair the defect gene. One day? Well, perhaps this day is already here. In December 2018, the Chinese scientist He Jankui claimed in a Youtube Video to have altered the genome of twin girls before implanting the embryos into their mother’s womb. These children would thus be the world's first genetically edited babies. “Pandora’s box has been opened“, was the almost unanimous reaction all over the world. Yet, nobody knows which off-target effects the twins might experience. No one knows which repercussions this will have on the children of these twins or the generations that will follow them. Hence, we are facing a huge ethical challenge that does not stop at the borders of national or continental ethical thinking.
But let us return to the question of what we might do as healthy sick people who have not yet used CRISPR/Cas, and who are not hidden in a faraway laboratory in China. I think that there is a lot to think about even without what has recently happened in China. Allow me to just raise a few points: When everyone will know his genome, one important issue will undoubtedly be how well people will be equipped to deal with their individual risks. Thus, we will have to improve people’s risk competence and to practise with them how to deal with their knowledge in responsible ways. This would allow everyone to make better informed decisions about which preventive measures should be implemented. At the same time, we have to reflect on the question of who is allowed to define what would count as which kind of “risk” and who would accordingly be at what “risk”. We will have to become more sensitive to the dangers of manipulation and indoctrination. And that means, of course, also that we should always ask who will (would) benefit most from which course of action. To name but one concrete example: What will happen to the field of insuring oneself? Will people have to sign new – optional or even mandatory – contracts to insure themselves against the results of their individual genome analyses? Of course, a wise handling of risks does not mean that we have to refuse all preventive measures. But it also does not mean that we have to accept each and every measure that others might try to force upon us.
I would like to suggest that we put a renewed trust into the significance of the openness of the future. Perhaps we are even in need of a new culture that might take solace from insecurity in light of the genetic revolution. This would of course not be a culture that condemns control and prevention. But it would be a culture that reminds people that this is not the only way to be redeemed. The main issue is the difficult search for a proper balance between appropriate medical measures and their desired effects. This will be what might be called an ethics of prevention. And this ethics would, amongst other issues, have to deal with the following: Everyone involved in medical decision-making must be well-trained. Any exclusive focus on the good of “health” poses the danger of making this entity an absolute and people-independent good. But such an individualistic perspective will almost inevitably lead to the erosion of solidarity. Moreover, each healthy sick person who has successfully implemented preventive measures might fall into the trap of a false sense of security. And these are but two aspects that could and should be added to the current debate from Christian ethics, a discipline with a high sensitivity for the vulnerability of human beings – in spite of, but perhaps also specifically because of the current “geneticization” of society.