Essays on Biomedical Law and Ethics E-Book

Brigitte E.S. Jansen

• Herausgeber: BookRix
• Kategorie: Fachliteratur
• Sprache: Englisch
• Veröffentlichungsjahr: 2017

Beschreibung

The Book The collection of five given papers and presentations from conferences between 2005 and 2008 are discussion papers. The perspectives of the essays are based on biomedical ethics and legal reflections. The papers were presented on important international conferences and congresses. Included are the following talks: "Biotechnology and Economy: An ethical conflict of interest?"; "Human Biobanks -- Trustees and aspects of the current German discussion"; Biobanking and genetic testing: A comparison between European countries and India, "New Epidemics: A chance for Social rights, Justice and Health?" and "Genetic testing, pharmacogenetics, privacy and the responsibility of doctors in clinical trials". The author hopes that this collection will stimulate further discussion

Leseprobe

Brigitte E.S. Jansen

Essays on Biomedical Law and Ethics

Selected papers 2004 - 2008

BookRix GmbH & Co. KG80331 Munich

Preface first edition

Scientific research on biomedical technologies has become one of the most important protagonists of developments and changes in the world societies. We can consider that there is a formidable impact and progress on the discussion and pressure on the political system. This pressure comes from the media because of the more and more growing development of information and providing of knowledge. So the lay man was and is confronted by increasing knowledge and moral positions ranging from cautious approval, to wait-and-see attitudes, to unconditional condemnation.

As a result of this progress law making and the influence of ethicists is increasing, esp. in countries without existing laws in this field.

The following papers are given and the colleagues and students have asked me to publish it in one volume. Therefore, I decide to take five lectures as a trial.

St. Jean Saverne , October 2008

Brigitte E.S. Jansen

Preface E-Book

 The papers were published a long time ago and they had stimulate a broad discussion.1  So I believe it can be interessting to publish a second edition, even from an historical point of view and an ebook.

Baden-Baden, Oktober 2017

Biotechnology and Economy: An ethical conflict of in¬terest?[1]

When confronting the issues related to developments in Biotechnology, we must repeatedly ask ourselves anew as to what can and cannot be justified in an ethical sense. For radically new ethical questions seem to arise through innovative techniques such as stem cell research or GMOS and on the other hand the so called "economic area". In the following I would like to focus more on society as on economy, because the term "economic area" is from my point of view only a synonym for the perception of society. The lay man on the street has problems to understand what happened. He is confronting with new technologies and knowledge which is mostly produced by industri­al financed. From this point of view I take as an example the German stemcell research.

1. Ethical questions and technology

If we regard the "ethical discussion" about current innovation in biotechnol­ogy, we can observe that the central problem is whether we should be al­lowed to do what is possible and who do it. This can be put more precisely in the sense of how much or what aspects of what is feasible should we be permitted to carry out. This narrowing of the topic seems to be helpful since we are not asked as to what we can actually do, particularly since it seems to be difficult to state on what basis one can measure or judge "our" abilities at all. It would then be necessary to ponder about the borders and the relation­ships between knowledge and lack of knowledge. But above all we should reflect about the relationship between technically realizable knowledge and comprehension of the context and phenomena that (potentially) influence technology. It is often not noticed that outside influences do not first start with application but already begin in research and in most cases financed by the industry.[2]

As an example, I would like to give an outline of the current German discus­sion about the. This debate restricts itself to searching for the indisputable moral limits of the technically possible. This is made discernable in a follow­ing extract from this legislation.[3]

Paragraph One, Section 1 the Embryo Protection Act states: "a person who attempts to artificially fertilize an ovum for any other purpose than to cause a pregnancy for the woman from whom the ovum comes shall be punished with a prison sentence up to three years or a fine". Peter Kaiser (Clinical Ge­netics, University of Tübingen) remarks in his commentary to this that the provision should serve "to prevent the extraneous utilization of human em-bryos."[4] He continues in this line: "Although the concept is not used, it is aimed primarily clearly and totally against 'consuming embryonic re­search'". Furthermore, Kaiser contemplates as to what in the scope of this ban (notwithstanding the restrictions caused by these prohibitions) could be in favor of research. The "development of a preimplantation diagnostic me­thod" belongs to this category.[5]

This commentary (cited as an example) moves itself within the previously negotiated limitations and contours of the well-known considerations regard­ing the prohibition of embryo "consumption". This focuses on the function of legislation to protect legal rights - to which human dignity, protection of life and freedom of research [6] belong. It is unclear as to what the term "free­dom of research" in this context should mean - especially when this is placed next to the concepts of "human dignity" and "protection of life". Above all, "freedom of research" should mean autonomy from State interference and, in the same sense from economic interests. However, this does not apply, for example, to freedom from moral norms such as those that are (for instance) tangible in the legal system.

This discussion, which is carried out in an ethical sense, is located for the most part within the bounds of this field of tension or within the settings of the conflict between morally binding legal rights. However, this is clearly a narrowing of the concept of ethics.

It is possible to take the view that it suffices to have laws that protect funda­mental legal rights (like the protection of life or human dignity)[7] that are not to be clarified further in their substance than this. This is not only because legislation should perhaps be neutral in an ideological sense but also because through every clear determination of the contents, these legal rights could be put in danger. An example of this is if one makes substantial assertions as to what human dignity is constituted of or upon what it is based This can even be the case where one characterizes human dignity as being the dignity of a "person"- if one raises the question as to the difference between (mere) humanness and personhood. This leads all too easily to seeing personhood or human dignity as dependent on a process of bestowal instead of following the categorical determination (kategoriale Bestimmung) that humans are per­sons in every sense of the word. [8] To be an offspring of humans then means not only to belong to the biologically ascertainable species of humans but also per se to be a person.[9] Therefore it is highly questionable to state that human dignity can be attributed or bestowed. What is conferred can also be denied or taken away - but precisely in this case there is no "court of appeal".[10]

In any case, it would be wise to limit things as they are to "black boxes" such as human dignity[11] and the individual, instead of trying to give more concrete content to them. By this restriction one can avoid putting at risk the very aspects which make these ideals worthy of protection - as frequently happens when personhood is too closely defined on the basis of distinguish­ing features or characteristics. In this sense, the duty to protect legal rights should by all means remain in sight and be retained in its specific meaning[12]. However, it is not necessarily true to state that with this function all neces­sary ethical conditions are fulfilled. At any rate, the magic formula can not read as "Anything which is not forbidden is allowed". Rather, the question is as to what in the permissive zone is ethically justifiable and what is not. It is the function of ethics to reflect about what is good and bad within the sanctioned norms of human experience. The question of the Good definitely has its place next to the issue of legality. [13]

However, the following example also shows that legislation frequently reaches out beyond such basic protective functions. In the Law for the Pro­tection of Embryos, in vitro fertilization is bound to pregnancy - as if one wanted or could say in an affirmative manner that people may only repro­duce through the pregnancy of a mother. A definite description of the Emb­ryo Protection Act should not only be interpreted in the sense that embryos are to be safeguarded, but also in the meaning that the behavior of doctors (according to the Hippocratic Oath and the tradition thereof) should serve exclusively as a support for pregnancy - and in all events (in the same sense) any research which might prove to be a sine qua non for this. On the other hand, it is senseless to try to justify related research that evades its primary goal - that is, the support of pregnancy. [14]

Thereby, whether we want to or not, we are also saying something about "humanity" - or more specifically - our human life form. This occurs clearly for example where the provisions of the Embryo Protection Act assume that for humans there can be no such thing as a divided motherhood.[15] Kaiser re­marks (as regards to § 1, Clause 7): "The relationship between the mother and child that comes into being during the pregnancy is valued in this sense higher than the genetic". The legislator wishes to cause the child to remain with the mother who has borne the child through the term of pregnancy. This is not only protection of life but also safeguarding of the human form of life. For this has its own compelling logic: it is not a matter of discussing the possibilities of the (trans)formation of human life but rather to critically keep in mind the idea of a human(e) life form. With reference to the human form, this alludes to that which is not up for grabs. This is the case because of (for the moment an a priori conjecture) the fact that this inalienable right is inhe­rent to our existence as human beings not because we claim it but because this attribute belongs per se to us.[16]The question naturally arises as to how this is to be understood.

We are not talking here anymore in a general sense about humanness or a "black box" called "human" that we see at the mercy of some anonymous development - for example an evolution where we believe we are at the qua­litative pinnacle. As the example shows, the human life form definitely has concrete contours which determine what this humanum as such implies in a positive ethical sense. Since the human life form comes into play in such a concrete sense (for example in "pregnancy", birth and death), it would be too abstract to take the following orientation model as the starting point - where on the one hand only prohibitions and protective regulations pertain but on the other hand a resounding silence echoes relating to the description and characterization of the human life form. What is more, the question is raised precisely in this area as to in what ethically comprehensible way of life we behave.[17] This is precisely the object of an ethical system that can not limit itself to questions of legitimacy but speaks of whom we are - in view of our human life form.[18]

A person who asks whether one may do absolutely everything which is feas­ible has, in a practical sense, just reduced the object of ethical reflection in both everyday life and in medicine. The object of ethical reflection ends up being technical procedures - reproduction instead of "getting kids" or a technically steered ending of the functions of the organs instead of a natural death. It is quite apparent that the reduction of these ethical problems to questions of legitimacy and the transformation of life processes to technical procedures are all linked up together.

As far as every kind of medical technology/practice is concerned, we can ask ourselves in this sense as to what has changed for our life form in a holistic sense and what continues to change. This is the determining question so that we do not think in the pattern of progress through which we can classify all things and thus declare everything as morally neutral. The potential dilemma related to this fixation arises since there is nothing which can reveal or de­termine what progress is made up of except by means of the human life form which should not be delivered up to this ideology of progress. However, in the real world, it is precisely our life form that is up for disposal. Thus, it is vitally necessary to try to comprehend what is in the process of change or if in fact something is radically changing in regards to the human life form. These changes do not occur only through large-scale programs such as the "Human Genome Project" and the consequences thereof but through every new (perhaps marginal appearing) form of technology that leads to new op­tions coming into play.

Regine Kollek[19] shows in view of the differences between prenatal and preimplantation diagnoses such a change within the technical alternatives. However, this is quite within the boundaries of its metaphysical meaning. R. Kollek lists (as a sample) the following differences and far-reaching changes:[20]

For the prenatal diagnosis it is characteristic that "the decision to ter­minate the pregnancy is a decision against a specific....fetus and does not involve a choice among various embryos or fetuses".For the preimplantation diagnosis, it is a characteristic feature that "there does not exist a physical relationship between the woman and the embryo - thus one cannot speak of pregnancy". "The decision as to whether one should implant or discard an embryo implies a selec­tion process where the conflict relating to a concrete, developing fetus and with an existing bonding relationship plays no role".[21]

These and other distinctions seem to be radical and to change our under­standing of the human life form.[22] But do they really do this? In order to be able to answer this question, we should not focus our sight merely on the specific outward appearance of new technologies. Rather, this refers to the question as to what the goal of in vitro fertilization should be. With this me­thod, the problem of selection is again highly relevant even when the prima­ry goal is not this but the realization of a wish for children. However, this is a problem that already has existed previously. Here the problem of means (which have their own compelling logic) can be clearly seen. As soon as a new technical remedy is made available, changes to our life form arise. This is even so when preimplantation diagnosis[23] only has the goal of excluding the possibility of severe hereditary diseases (however this is carried out) - a selection process (as in other technologies) comes into play. With this me­thod, no existing or conflicting condition is changed by an abortion but a healthy child will be gained in a carefully planned manner. (This process is also distinct from the methods of genetic consulting).[24] The preimplantation diagnosis introduces in this respect a completely new option at the technical level - which is not possible with prenatal diagnosis. This is namely the possibility to gain a potential child before and outside of the pregnancy - which will become a "real" child when the decision (over life and death) is positive.[25] But a basic concern here is to how to deal with a conflict situation similar to that in pregnancy. A specific situation is estab­lished where a decision must be made and a remedy is proposed to resolve this problem. However other obligations ensue besides the de facto spatial shift of decision making to the laboratory. For example, it may be potentially necessary to not mention a negative decision if it seems inappropriate to tell the concerned people what affliction is present. This can be done because (other than in genetic counseling for a desired pregnancy) it is always possi­ble in principle to make a further attempt at a child[26]. However, these differ­ences do not allow an essentially different judgment in the sense of a holistic reflection of the matter. This means in a very practical sense that while one must also take into careful consideration the rights of the embryo, obviously a woman must be given the possibility of having a preimplantation diagno­sis.

Thus, the human life form is not essentially changed by the introduction of new technology. This is especially the case when the discussion about "the human" draws attention (for example the separation of reproduction and sexuality or the division of personal procreation and reproduction).[27] Rather, a different change takes place as regards to the intensity and purposefulness of life planning. This transformation can hardly be picked out as a central theme in an ethical sense because it seems to be (again in an ethical sense) highly desirable. Is not every kind of perceived responsibility and its respec­tive (scholarly) circumspection an ethical norm? Cannot precisely this kind of medical help serve to promote prudent life planning or even life forma­tion? And even when this autonomy has its boundaries because new obliga­tions come into being[28] - who could doubt the imperative itself - what mod­ality is a viable alternative?

Let's carry the question somewhat further: what has changed or has been changed in that medical technology can now determine the human life form?

Generally speaking, the situation has intensified where we live in a world of increasing options that affect the human life form in his/her basic contours. With the numerous technologies, new options come into existence. Some of these alternatives already have come into being with in vitro fertili­zation; others originate, as it were, from the very nature of the matter. When one helps a person to gain a child this is also a de facto possibility to do re­search on embryos. However, it is precisely in its continuity that the emer­gence of manifold and many additional potential options characterizes the situation in ethical issues.

The question as to what this can mean for our understanding of humans can be answered in varying manners. But this intrinsically multipolar condition does not allow these different attempts to be dismissed as being invalid or let alone neutralized through an appeal to an inevitable "evolution". In the final analysis, "we" decide what these options means to us and in this context how we can and should understand our human existence. We remain confronted with the situation where we have to make decisions and accordingly remain "challenged" by ourselves as (our!) conservative Embryo Protection Act here in Germany forbids further steps forward. As long as our understanding of the relationships between things does not essentially change and we do not try to comprehend each new technology in its context and continuity, we will remain imprisoned in this situation.

Annex: Presentation

Slide 1: Title

Slide 2: German Embryo Protection Act