Dekanting Preimplantation Genetic Diagnosis and the Saviour Child: a Personal Memoir

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Dekanting Preimplantation Genetic Diagnosis and the Saviour Child: a Personal Memoir Focus_ Präimplantationsdiagnostik / Diagnostic préimplantatoire / Preimplantation diagnosis und gezielter PID klar zweckorientierten Erzeugung desje- Dazu braucht es einerseits den entsprechenden gesetzli- nigen Kindes, das für ihr krankes Kind Heilung bringen chen Rahmen, der Missbräuche verhindern sollte und ande- könnte. Aus dieser individuellen Notlage heraus ist das Han- rerseits die ausführliche Information und eingehende Bera- deln der Eltern verständlich und der Vorwurf der Instru- tung, die im Idealfall zu einer Bewusstwerdung führt um mentalisierung wird relativ. Kann man es Eltern verdenken, welche Werte es eigentlich geht. Im besten Falle könnte so dass sie diese allerletzte Möglichkeit in Anspruch nehmen, jeder Mensch befähigt werden in betreffenden Situationen um ihrem kranken Kind zu helfen? entsprechend den eigenen Wertvorstellungen eine Ent- Die grundsätzliche Ablehnung jeglicher Selektion auf- scheidung pro oder kontra einer Diagnostik mit allen Kon- grund bestimmter Merkmale, sei es im positiven oder nega- sequenzen fällen zu können. tiven Kontext, kann im individuellen Fall oft nicht aufrecht erhalten werden, da die Gründe, die zu einer Selektions- massnahme führen, wie im Falle von Elodie, schwerer wie- Korrespondenz gen als die grundsätzlichen Gründe dagegen. Dr. med. Judit Pòk Dennoch ist es klar, dass im grösseren gesellschaftlichen Frauenpoliklinik Zusammenhang der Automatismus einer Diagnostik und Departement Frauenheilkunde Selektion, wie er bereits bei der pränatalen Diagnostik weit- Universitätsspital gehend stattfindet, vermieden werden muss. Frauenklinikstrasse 10 CH-8091 Zürich e-mail: [email protected] Alex Mauron a Dekanting Preimplantation Genetic Diagnosis and the saviour child: a personal memoir _Viewpoint a Institute for biomedical ethics, Geneva Being both an academic bioethicist and a member of a na- Ruwen Ogien (3); but that is not going to help and may even tional ethics body (in my case, the Swiss Bioethics Advisory make one’s motives morally suspect. Public bioethics is often Commission – NEK-CNE – from 2001 to 2007) is not always expected to follow, or indeed promote, moralistic conven- easy. The rules of the academic world favour independent tional wisdom. thinking, speculative boldness, and examining all arguments NEK-CNE’s work on preimplantation genetic diagnosis (PGD) with an open eye no matter how preposterous or politically provides a good example of this tension. The ethical dilem- incorrect they may appear at first sight. In «public bioethics» mas of PGD were very much present on NEK-CNE’s agenda however, possible discourses are heavily constrained by extra- during my tenure as a member. Moreover, it is currently the neous considerations. For one thing, the state of current law only topic on which the Commission has issued two official and the limits of realistic changes carry much weight. As the pronouncements (no.10/2005 and 14/2007, see the NEK-CNE saying goes, la politique est l’art du possible, and what counts as web page) (4). The first report proposed a cautious and partial possible in politics bears little relation to what counts as lifting of the wholesale ban on PGD existing then and now plausible, or at least worth discussing, in the philosophy in Swiss law. The second discussed newer issues related to seminar. More troublingly perhaps, arguments that cut no PGD, especially the «saviour baby» controversy, and con- ice with many philosophers, or at least are considered mas- cluded that the commission was deeply divided on the ethi- sively controversial, are sometimes treated as sacred mantras cal acceptability of this practice. in public bioethics. Such is the concept of «human dignity». In the bioethics literature, the use of PGD to select a future Someone only needs to assert, in the appropriately dour tone, child with the appropriate characteristics to act as a tissue that a particular biomedical practice is «against human dig- donor for a pre-existing sick sibling has been abundantly dis- nity», and anyone disagreeing is facing an uphill battle. One cussed. While the controversy goes on, the accepting view is could of course quote Ruth Macklin (1), Stephen Pinker (2) or widely represented and has to some extent been translated Bioethica Forum / 2008 / Volume 1 / No. 2 105 Focus_ Präimplantationsdiagnostik / Diagnostic préimplantatoire / Preimplantation diagnosis into public policy in a few countries, notably the UK (5 –7). In plexity shows through when comparing NEK-CNE’s 2005 and contrast, from a Swiss perspective, that same view is typically 2007 reports. On the one hand, the saviour child is not the seen as liberal and permissive in the extreme. Defending it central concern of the 2005 paper, which does devote a rather in an academic context is no problem of course, but carrying balanced section to this issue (section 3.6). Still, in keeping these debates over into a political-ethical body, as I tried to with the central concern of Swiss debates that views any kind do, feels like a mildly eccentric and perhaps futile exercise, of embryo selection as dangerously close to eugenics, the since there is no realistic prospect that the dominant con- clinching argument seemed to be that: servative stance in the political arena could budge in the «In this context (i.e. PGD for tissue typing), the ethical eval- foreseeable future.1 Indeed not only does the law presently uation of selection must take a peculiarity on board: while make PGD illegal for any indication whatsoever, but that par- searching for characteristics that have nothing to do with ticular ban is part of a solidly interlocking network of prohi- the health of the future child herself and do not concern a bitionist legislation outlawing the freezing of embryos, all disease of the rejected embryos either, some embryos were forms of cloning, oocyte and embryo donation, the use of retained while others were excluded. This kind of selection heterologous sperm in infertility treatment of unmarried practice is perceived as morally abhorrent by many Commis- couples … several of these bans are based on an article of the sion members and considered ethically blameworthy» (ref. 4, Swiss constitution, no less (art. 119). That circumstance raises 2005 report, p. 48). an additional high hurdle in the way of any legislative In contrast, the 2007 paper goes much further in criticizing change. As a result, the role of the ethicist defending liberal conventional objections to saviour child practices and NEK- and utilitarian positions in Mitteleuropean public bioethics is CNE expresses some dissatisfaction with arguments of its mainly to call attention to contrarian views in a friendly way, own earlier document. Furthermore, it is quite aware of the without too many concrete expectations. paradox of concreteness mentioned above. While describing the Going back to NEK-CNE and its discussion of PGD in connec- various contexts in which the saviour child issue is debated, tion with tissue typing, it may be initially surprising that it remarks: this issue ended up being debated so extensively. In fact, the «When examining these different moral frames 2 more closely, Commission was able to move beyond the usual knee-jerk it is mainly the discrepancies between considering PGD «up Kantian response stating that the saviour child is being «in- close» (as by concerned couples and physicians), and consid- strumentalised», i.e. treated as means only and not as an end ering it from afar (in the public debate) who become readily in itself. What pullied the Commission out of its moral com- apparent.» (ref. 4, 2007 report p. 4) fort zone is that a concrete «saviour baby» case erupted on The «instrumentalisation» argument is criticized more sharply the Swiss media scene in 2006. A couple from Geneva had than in 2005, much along the lines of what follows in the final had a first boy, Noah, suffering from granulomatosis. It had paragraphs of the present paper. But in the end, the report can been found that he could be saved by a stem cell graft from only take stock of the deep division amongst NEK-CNE mem- a compatible healthy donor. The couple went to Brussels to bers on the permissibility of saviour child uses of PGD and obtain PGD (which is legal in Belgium). As a result, the girl concludes by listing the two, more or less equally represented Elodie was born and provided the bone marrow graft for her positions and their main arguments. Yet interestingly, the text brother. The transplant was performed in Switzerland and adds a unanimous statement to the effect that: proved successful. This success story of a saviour child was «(…) parents who obtain PGD abroad in order to beget a child widely publicized in Switzerland. Media responses were usu- with the appropriate HLA type act on understandable and ally favourable to Elodie’s and Noah’s family, especially in honourable ethical motives and deserve no moral or ethical the French-speaking part of the country. Thus the Commis- blame. Those in the Commission that reject the legalisation sion experienced first hand how an abstract issue is trans- of PGD for tissue typing justify their position with arguments formed more or less deeply by having to face a specific hu- of social ethics and do not question the individual decision man experience squarely. The whole Kantian language game of parents» (ref. 4, 2007 report, p. 16). of «being treated as mere means, rather than an end in it- Finding a particular behaviour morally praiseworthy yet still self», of «human dignity», and of «instrumentalisation», in wanting to outlaw it may raise a coherence issue that was not which Central European bioethics feels naturally at home, discussed. suddenly seemed rather odd and foreign to reality. This per 1 A parliamentary majority expressed the intention of lifting the ban on PGD in specific limited situations, but certainly not to allow saviour children. 2 In English in the original text Bioethica Forum / 2008 / Volume 1 / No.
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