Alexis Amid Neme
email: alexis.neme@gmail.com

Why Microsoft Arabic Spell checker is ineffective

Since 1997, the MS Arabic spell checker was integrated by Coltec-Egypt in the MS-Office suite and till now many Arabic users find it worthless.

In this study, we show why the MS-spell checker fails to attract Arabic users. After spell-checking a document (10 pages -3300 words in Arabic), the assessment procedure spots 78 false positive errors. They reveal the lexical resource flaws: an unsystematic lexical coverage of the feminine and the broken plural of nouns and adjectives, and an arbitrary coverage of verbs and nouns with prefixed or suffixed particles. This unsystematic and arbitrary lexical coverage of the language resources pinpoints the absence of a clear definition of a lexical entry and an inadequate design of the related agglutination rules. Finally, this assessment reveals in general the failure of scientific and technological policies in big companies and in research institutions regarding Arabic.

Introduction

For more than two decades, English and French spell checkers are used by common and professional users on a daily basis. Since 1997, the MS Arabic spell checker was integrated by Coltec-Egypt in the MS-Office suite and till now many Arabic users find it worthless. Arabic users may choose to use the spell-checking functionality or not because of they find it untrustworthy. The users of Arabic spell checker are less confident than their counterparts for French. The main challenging issue: Arabic is a Semitic language where infixes are ubiquitously used whereas Indo-European languages use only prefixes and suffixes but not infixes.

"Arabic spell checking is an active area of research since results are not satisfactory." (Shaalan Kh. et al., 2003) and the state-of-the-art did not improve enough according to the author (Shaalan Kh. et al, 2012). A dozen of significant projects were initiated since 1990 in addition to, certainly, many dozens of unknown attempts. Only few Arabic spellcheckers were achieved but with poor and uneven results. Lately in May 2012, the Google Arabic spell checker has been released. It flags randomly and erroneously correct words which are fully or partially diacriticized.

One should distinguish lexicon-based projects from word-list-based projects (Shaalan Kh. et al., 2012). Often, Arabic word lists are made by processing a huge Arabic corpus, and then the list is controlled semi-automatically. First, word list projects are dedicated to spell checkers; while with lexicon-based project, one application may be spell checking, but others may also be information retrieval, morpho-syntactic analysis, and so on. Second, the word list should include word forms and all their possible agglutinations (prefixed and suffixed particles), but all possible agglutinations may perhaps not occur even in a huge corpus. While in a lexicon-based project, one can cover all possible agglutinated word forms by attaching to each Part-Of-Speech a grammar of agglutinations [START_REF] Neme | A lexicon of Arabic verbs constructed on the basis of Semitic taxonomy and using finite-state transducers[END_REF].

As far as we know, the best commercial package on the market is still the MS-Office spell checker. The spell checkers of the GNU project for Open-Office (Ayaspell) look puzzled. We notice this disorder in the project documentation. Since developers are computer scientists, they do not have a lexicographic background and they borrow, indiscriminately, traditional concepts from traditional grammar. Developers are confused between traditional morphology and computational models; between root-and-pattern Semitic approach such as root, pattern, stem, prefixes, stem, suffixes, infixes, and concatenative techniques. They are borrowing concepts from traditional derivational morphology such as agent noun, patient noun, and instrument noun, and so on, and mixing them up with inflexional morphology. No surprise, because all together these concepts configure a complex model; and so far, all Arabic linguistic tools without exceptions do not have clear definitions of these concepts. No matter how witty your algorithmic approach are; these borrowed linguistic concepts in the implemented model should be defined clearly and not imported blindly.

Since MS-Office 2007 is still commonly used by Arabic users, we did not evaluate the MS-Office 2010 spell checker, and we are not sure if COLTEC is still responsible of this 2010 package. Arabic users suffered to upgrade from MS-Office 2003 to 2007. Therefore, many MS-Office users kept the version of 2007 and did not upgrade to 2010, at the individual level at least. It seems that there are some improvements in the lexical coverage of the spell checker of the version of 2010; but still many problems exist. Nevertheless, it is difficult to argue for an upgrade to 2010 version because the new spell checker has some improvements. MS-Office lost its credibility in the previous versions of the spellchecking tools. The main question to Microsoft remains: in order to have a better lexical coverage in the 2010 version, would Microsoft dare to reveal the complexity and the cost of upgrading the Arabic lexical resources?

Revision rules are defined mainly by professional editors and revisors in the printing industry. On one hand, revision rules in Modern Arabic depend mainly on current orthographical standards. usage standards are defined by professional revisors of traditional editors and by current orthographic usage in Arab regions. Therefore, there are some regional variations in orthography but also in the editing rules of a publisher in the same Arab country. On the other hand, the normative grammar or prescriptive rules defined by Arabic language institutions are generally not respected if they do not fit the publication editor rules. For example, normative grammars advice to put the ending accusative case "-F" before the Alif such as in ا ً كتاب "ktAbFA" 1 , (book). For normative orthography, the Alif is always followed by a silent vowel, sukuun; thus, "-AF" is a mistake. Such normative rule is far from being respected. The editing industry in Lebanon uses more the form كتابا ً "ktAbAF" than the normative form.

In this study, we investigate and evaluate the MS-Office 2007 Arabic spell checker using test sets. The MS-Office spell checker flags real spelling mistakes. Besides them, spell checkers also flag erroneously numerous correct words, called false positive errors, which decrease the precision of the tool. Therefore, the user's confidence in the tool decreases in proportion. We focus in this study on words flagged erroneously and on the lexical coverage of lexical resources. Generally, false positives are related to hamza spelling variations, affix agglutinations, feminine or plurals, and missing entries or orthographic variants. The test set includes 3 parts: a list of 550 verb occurrences; 10 pages of reviewed document, i.e. 3300 words without spelling errors, and finally a random list of singular/broken plural.

In Section 2, we give a brief background for spelling mistakes, especially the most common ones, and related definitions and terminology. In Section 3, we describe and analyse the result with the test sets for the MS spell checker. In Section 4, we give some concluding remarks.

1 In this paper, examples displayed in the Latin alphabet are transliterated according to Buckwalter-Neme (BN) code, a variant (Neme, 2011, p. 6, note 4) of Tim Buckwalter's transliteration that avoids the use of special characters.

Background in spelling mistakes

For any language, spelling errors are limited to 3 types: typographical such as <comma> not followed by <space>; lexical or non-word errors; non-lexical or real-word errors. Typographical errors are simple to detect by several dozens of rules. The detection of lexical errors is generally based on a lookup procedure in a large dictionary of all valid words of a given language. The non-lexical are valid words which are invalid in the context of a sentence. The detection of non-lexical errors need complex grammars rules, and sometimes semantics which is only partially achieved even in English. So, our focus is lexical errors or non-word errors which require a large Arabic dictionary. We have demonstrated the feasibility of such a dictionary with a verbal lexicon with 15 400 entries [START_REF] Neme | A lexicon of Arabic verbs constructed on the basis of Semitic taxonomy and using finite-state transducers[END_REF].

Spell checkers algorithms are based on a lookup procedure in a large dictionary. So-called Out-Of-Vocabulary words (OOV) may be valid words which are flagged because they are out of the lexical coverage of the lexical resources. This is because flagging a word depends on the lexical coverage of the dictionary. On the other hand, error correction proposes suggestions to correct a misspelled word and is out of the scope of this evaluation.

Spelling error types are letter substitution, letter omission, letter insertion, letter transposition and space omission. We have chosen a sample of errors which MS-Office 2007 flags by underlining them in red.

Testing MS-Office 2007

The COLTEC-Egypt package of Arabic spell-checking tools was chosen by MS-Office in 1997. For our evaluation of MS-Office, we have chosen the Arabic (Saudi Arabia) dictionary. In the rest of the study, errors flagged by MS-Office are indicated in bold.

b) Evaluating the verbal lexical coverage

We have extracted from a corpus a random list of 550 fully diacriticized agglutinated verbal occurrences. We have submitted this list to MS-Office. It appears that 2 verbs are missing in the present-perfect-3-person-singular: ى َ َام َى َت ي , ف ِ َس ْت َع ي (to grow, to shun). The Ms-Office lexical coverage of verbs is comparable to that of BAMA (Buckwalter T., 2002) which has also two missing verbs out of 8700 (cf. Neme A., 2011, section 6) . The verbal lexical coverage of BAMA is considered as medium.

Two other verbs suffixed with -hu ُ ْه َت َق ت ْ ان , ُ ه ن َ َاو َد َت ت (she met him, she exchanges it) were flagged erroneously; these forms exist in the dictionary, but without the suffix. c) Evaluating false positives in 10 pages' documents We selected three documents totalling 3 300 tokens, i.e. 3 300 strings between two spaces (about 10 pages), and containing popular science about three topics: pollution and fishing in Egypt, earthquakes in the world, and quality of water. It is a small sample of the NEMLAR Arabic Written Corpus [START_REF] Attia | Specifications of the Arabic Written Corpus produced within the NEMLAR project[END_REF]. This corpus was produced and annotated by RDI, Egypt, for the Nemlar Consortium. We used the documents in the fully diacriticized version.

MS-Office flagged erroneously 78 correct words out of 3300. Besides other true mistakes such as misspelled words or typographical mistakes in the document, the user must enter almost 8 decisions/page to ignore false flagged errors.

Here is a sample of correct words which are flagged (see details in the appendix). Examples are grouped by types:

-(1-3) false positives related to agglutinations, selected among 9 occurrences. 7 occurrences of <PREPOSITION><PRONOUN> such as "bi_haA" as in (1); "muluHati_haA" as in (2) whereas "muluhap" is in the dictionaries. feminine nouns ending with "p" are rewritten with "t" when followed by an agglutinated possessive pronoun. The spell checker flags randomly these noun, for instance, it does not flag "OaMitati_haA" variant of "OaMitap". Similarly, "sa_naHyaA" (3) is a verb prefixed by the future particle, whereas "naHyaA" is in the dictionary, and the spell checker does not flag "sa_naktob". -(4-5) false positives related to the feminine suffix "-t", "teh marbutah". MS-Office suggests substituting feminine adjectives with their masculine variants. -(6) False positives related to the feminine suffix "-t" "teh marbutah". MS-Office suggests correcting a standard Arabic form into a colloquial orthography with "h" which is considered improper by professionals. -(7-11) false positives related to hamza-under-the-Alif, selected among 43 occurrences. MS-Office considers many words with hamza-under-the-Alif as incorrect and suggests substituting it with a bare Alif. MS-Office suggests correcting a rich typographical representation by a poor one, which is unacceptable for professional proofreaders or writers. On the other hand, MS-Office suggests a rich typography with hamza-under-the-Alif for the two words: ًايجاد" "انراج and recommends ًإيجاد" "إنراج (production and existence). -(12-24) false positives related to Out-Of-Vocabulary scientific terms.

-(25-31) false positives related to Out-Of-Vocabulary geographical proper nouns.

# False positive error // "Glose" -Observations /////////// Correct agglutinated word flagged (9 occurrences) 1 ا َ ه ِ ب // " in_it" Flagged and all bi-PRO (7 occurrences) 2 ا َ ه ِ ت َ ُوح ل ُ م // "salinity_its" , whereas ح ٌد ه ي the unagglutinated variant exists.

3 ا َ ي ْ ح َ ن َ س // "we_will_live" , whereas نذيا "we_live" the unagglutinated variant exists 4 ٍ َّة ي ِ ب ُ ار َ ق َ ت // "proximity" as a feminine adjective whereas the masculine exists in the dictionary. 5 ٍ َّة ي ِ ق َ َِل ز ْ ان // "sliding" as a feminine adjective, masculine is suggested as correction.

6 ٍ ة َ د ِ ح // "alone" دده is the proposed correction variant with final "h" /////// Words beginning with hamza-under-the-Alif: false positives (43 occ.). are at least 15 000 entries. 2. Some familiar scientific, geographical proper nouns are missing, as well as some of their orthographic variants. 3. The correct rich typography of the initial "Alif hamza under" is flagged; and a "bare Alif without hamza" is suggested as a correction which is unacceptable for editors and professionals. 4. The lexical coverage of agglutination of prefixes and suffixes of verbs is unsystematic. 5. The lexical coverage of feminine and singular/broken plurals is arbitrary.

7 َ َار ك ِ ت ْ ح ِ إ // "monopole" 8 ِ اذ َ ِّخ ت ِ إ // "undertaking" 9 ِ ات َ از َ ز ِ ت ْ ه ِ إ // "tremblings" 10 ِ اف َ ر ِ ج ْ اإلن // "the_sliding" 11 ِ ال َ ص ِ ف ْ اإلن ِ ب // "in
This arbitrary and unsystematic lexical coverage pinpoints two main flaws in the lexical resource: the absence of a clear definition of a lexical entry and the inadequate design of related agglutination rules. The lexical resource cannot be fixed through superficial adjustments and needs a new design.

Conclusions and Arabic spell checker prospects

Why is the MS-Arabic spell checker for Microsoft so disappointing? We see two main reasons: the first is linked to the company's general strategy; and the second is linked to research funding.

It appears that Microsoft added the Arabic spellchecking tools to its basic products in order to improve product sales, not product quality. At least till 2007, Microsoft did not develop research on the spell checker through their companies, but they bought it from specialized companies. They are not interested in the quality of research behind. Their goal is to add an Arabic spell checker to their product in order to sell it to the world with the spell checker regardless of its completeness or usefulness. Thus, the value of the company's shares increases, shareholders do not care about the program effectiveness, but merely its existence. But, the Arabic user will relinquish the ineffective tool.

For 15 years, the introduction of the Arabic spell checker in the MS-Office Suite has not improved noticeably, nor its use increased or decreased; several copies have been issued by MS-Office later, but users did not notice any difference in the spell checker. It seems that Microsoft NLP Group does not have the expertise to control the quality of Arabic language resources nor to improve its accuracy. Since it is assumed that the Arabic spell checker is commercially safe, this reason has limited the possibility of funding research and to develop a reliable Arabic spell checkers by Microsoft or by any research institution.

The second reason is related to the efficiency of specialists in linguistics and related language technologies: the Arabic language expertise is limited and constrained by the previous results of research mainly focused on techniques adapted to Indo-European languages. For example, the most prominent research centres and mechanization of the Arabic language are in America and Europe. Egypt and Algeria have recently introduced a number of centres in the Arab countries; but they are likely to reproduce the same problems and loopholes as in Western centres.

Research is still active to produce a powerful Arabic spell checker in order to conquer the trust of Arabic users, students, writers and revisors. The experience of automating Arabic language is not similar to Indo-European languages, and thus the foundations of algorithms should be adjusted to the Semitic nature of the Arabic language and its implications in language technologies. Few researchers are working on the basis of "Semitic" approaches and modern lexicography in order to create practical tools in Arabic Natural Language Processing.

Table 1 :

 1 Types of spelling errors with examples. errors Flagged by the MS-Office Arabic spell checker are in bold.

	a) General evaluation for detecting types of errors
	Observations	Error Type	Mistake	Correct	#
		letter
		substitution	شاعد	ساعد	1
			ضدفح	صدفح	2
			هرج	ىره	4
			شزاعى	شزاعي	5
			شتحت	ذتذد	6
		letter omission	محد	يذًد	8
			كتثى	كرثٌا	9
	MS-Office flags two errors with two agglutinated direct object
	pronoun suffixes		مكمها يهصّ	مكمىها ّ يهص	10
		letter insertion	هم ّ عه	م عه	11
			يجىيىن	يجنٌٌ	12
	For letter transposition, MS-Office flags both errors (lexical
	coverage)	transposition	إستتمع	إستمتع	13
		space omission	وامانىند	انٌند ناو	14

Table 3 :

 3 A sample of false positive errors flagged by MS-Office 2007 in 10 pages documents test set. e) Conclusion for MS-Office 2007 -Coltec 1. The verbal lexical coverage of MS-Office is medium or below 9000 entries. Verbs in a common Arabic dictionary

	_the_isolation"
	////////// Missing vocabulary -Flagged errors -Out-Of-Vocabulary // "far" as a feminine adjective. // "in_the_deep" as a feminine adjective. // "authentic" as a feminine adjective // "the_tectonic" as a feminine adjective, // "the_nitrogenised" // "the_magma", this word is listed in the Larousse Arabic dictionary // "The_tsunami" // "the_cracks" : Broken plural is missing whereas the singular exists. // "the_hunting_field" missing; the broken plural is proposed as a correction // "and_the_magnesium" // "the_chlore" // "the chlorated" as a masculine adjective // "and_the_shrimp(s)" and 5 occurrences of common Mediterranean fish	ٍ َّة ي ِ د ُ اع َ ب َ ت ِ َّة ي ِ اع َ ْق ال ٍ َّة ي ِ يق ِ ق َ ح َّة ي ِ ون ُ ْت ِّك الت ِ َّة ي ِ ين ِ ِ وج ُ ر ْ ت ِ َّي الن ِ ير ِ الصَّه ي ِ ِّس الت ام َ ون ُ ِ وع ُ الصُّد َ يد ِ ص َ ْم ال ْ وم ُ ي ْ يس ِ ن ْ غ َ و ْم ال َ ُور ُل ْك ال ْ ْ ر َ ْم ال ْو َل ك ُ ْ ان َ ي ْ الروب َ و	12 13 14 15 16 17 18 19 20 21 22 23 24
	////////// Missing Proper Nouns -Geographical or related
	// "Sumatra" // "Himalaya", existing undiacriticized form variant ىًاليا // "the_Andes" // "Aegean_sea", existing other orthographic variants إيجح , إيجيو // "Sri Lanka". // "Americans", variant missing // "the_Aztecs"	ْ ة َ ْر ط َ وم ُ س ْ ا َ ي َ اَل َ م ِ ه ْ يز ِ د ْ َن ْ اْل ْ ه َ يج ِ إ ْ َا ك ْ ن َ ِيَل ر ِ س ْ ان َ ِك ير ِ َم أ ْ يك ِ ت ْ َز ْ اْل	25 26 27 28 29 30 31

d) Evaluating lexical coverage of plurals: on a sample list of broken plurals

In this section, we investigate the lexical coverage of related pairs of singular/broken plural forms. We have submitted to MS-Office a list of 850 pairs of singular and broken plural. Many broken plural nouns (or adjectives) are missing in the dictionary, even when the corresponding singular is present. Some singulars are missing also, even though their BP is present in the dictionary. The table below lists a sample of missing BPs and missing singular word forms.


Joëlle Vailly

Genetic Testing, Birth, and the Quest for Health

Keywords: genetics, newborn screening, biopolitics, life, sociology

Newborn screening for genetic diseases has developed rapidly in Western countries. These biopolitics raise the question of birth as a sociological "knot" insofar as it is the threshold between the (possibly ill or disabled) child and the fetus. The question therefore addressed in this text, based on a field study of newborn screening for cystic fibrosis in France, is that of the link between the quest for good health (through treatment) and the elimination of poor health (by prenatal diagnosis). Do they reinforce each other or, on the contrary, are they contradictory? I analyze the positions of both mothers of screened children and clinicians regarding the following three points: prenatal diagnosis to preclude sets of sick siblings, identification of heterozygous individuals and generalized prenatal screening. This study shows how increasingly attentive patient care and an increasingly demanding approach to prenatal diagnosis reinforce one another. It also analyzes the role of taking action early on and evaluating the lives of sick or disabled people in this process. In conclusion, I engage a more general discussion about what I suggest calling a -quality life‖.

Newborn screening for genetic conditions has developed rapidly ever since the first publication suggesting a screening test for phenylketonuria, a rare genetic condition, in 1963 [START_REF] Guthrie | A simple phenylalanine method for detecting phenylketonuria in large populations of newborn infants[END_REF]. 1,2 Fifty years later, roughly 50 conditions are now screened for at birth in the United States, most of which are genetic. 3 More than four million neonates are screened there every year making newborn screening the most frequent test for genetic conditions in the country (Grob 2011, Timmermans and[START_REF] Timmermans | Saving babies? The consequences of newborn genetic screening[END_REF]. In France five diseases are tested for at birth, including cystic fibrosis [mucoviscidose in French] since January 2002 when the country opted to generalize newborn screening for this disease. 4 This development of newborn screening can be linked to the fact that during the 20 th Century the child became the target par excellence for screening as a medical approach [START_REF] Armstrong | Screening: Mapping medicine"s temporal spaces[END_REF].

Monitoring and caring for newborns reflects a longer-standing concern with the initial years of life and with perinatal health for, as Michel Foucault explains ( 2001), the family-child complex was the first focus of medical jurisdiction and infants have long been a preferred target of health policies. These newborn screening programmes are a form of biopolitics which refer us to the emergence, since the 18 th Century, of a process through which life, health and welfare have entered into political strategies, allowing the population's state of health to be observed, measured and improved [START_REF] Foucault | Dits et écrits[END_REF]. They present the specificity of being carried out at a momentbirth -that seems to constitute a sociological -knot‖, to paraphrase Ian [START_REF] Hacking | Seminar "Façonner les gens[END_REF], who uses the term to designate a situation resulting from contradictory tendencies. 5 An initial approach to this question reveals two elements that can be seen as contributing to these tendencies.

First, as Giorgio Agamben (1998, 131) writes, -one of the essential characteristics of modern biopolitics (which will continue to increase in our century) is its constant need to redefine the threshold in life that distinguishes and separates what is inside from what is outside‖. Birth certainly strikes people as a threshold separating the (possibly ill or disabled) child from the fetus. Although this seems obvious today, the anthropology of law shows that this threshold has changed [START_REF] Cayla | Du droit de ne pas naître[END_REF]. Historically, the Declaration of Human Rights of 1789 held that the mere fact of being born carried with it certain rights stating that men are born and remain free and equal in rights. As Agamben (1998, 127) put it: -Declarations of rights represent the originary figure of the inscription of natural life in the juridico-political order of the nation-state. The same bare life that in the ancien régime was politically neutral and belonged to God as creaturely life […] now fully enters into the structure of the state and even becomes the earthly foundation of the state's legitimacy and sovereignty.‖ In sum, before 1789, life belonged to God and the King of divine right. After 1789, birth, life and rights have coincided, and this strengthens the threshold effect of birth in terms of rights.

Second, birth represents a turning point between, on the one hand, the fetus and the prenatal diagnosis that can be offered in the case of genetic conditions and, on the other, the lives of people who can be ill or disabled, and the treatment provided to them. Birth makes it possible to bring together two types of practice and two social science research traditions. The first concerns reproductive health or what is at stake in genetic techniques; the second concerns the experience of illness and policies for disabled people, with variants in the latter regarding treatment for the sick and the social integration of disabled people as such. A small number of studies have attempted to combine these questions, through the -disability rights‖ critique of prenatal diagnosis and possible responses to that critique [START_REF] Erik | Prenatal testing and disability rights[END_REF]. Others have focused on the tension between the biomedical potential to both screen out imperfect lives and to enable people with significant disabilities to survive and flourish [START_REF] Rapp | Enabling disability: Rewriting kinship, reimaging citizenship[END_REF][START_REF] Landsman | Emplotting children's lives: Developmental delay vs[END_REF]. Still others have focused on the later reproductive choices of parents with a disabled child [START_REF] Kelly | Choosing not to choose: Reproductive responses of parents of children with genetic conditions or impairments[END_REF]; the comparative social history of areas in which perinatal medicine intervenes and social policies around disability (Ville 2011); or the question of whether newborn screening for and prenatal diagnosis of metabolic diseases are converging or diverging [START_REF] Buchbinder | Medical technologies and the dream of the perfect newborn[END_REF]. The idea informing many of these texts is that there are contradictory viewpoints, or a -knot‖, between including disabled people in society and excluding disease-affected fetuses. However, most of these authors do not seem to wish to directly address the question of the link between these two approaches on either side of birth; in any case they have not developed methodological means for dealing with this issue as they have not conducted any fieldwork that focuses both on care in the space of pediatrics and on prenatal diagnosis in the space of genetics.

The question therefore addressed in this text, based on my field study of newborn screening for cystic fibrosis (NSCF) in France, is that of the link between the quest for good health (through treatment) and the elimination of poor health (by prenatal diagnosis and the potentially related pregnancy termination). Is there a causal relationship between the two approaches -in other words does one lead to the other -or, on the contrary, are they contradictory? What channels this link and upon what is it grounded? My idea is that analyzing this link on the basis of newborn screening practices will allow an understanding of the sociological significance of certain contemporary biomedical developments.

In the first two sections of this article, I present the points of view of mothers (or parents) whose children were screened at birth, and I then go on to outline the clinicians' points of view in the third section. More specifically, I first describe two ways in which NSCF seems to have extended the likelihood of prenatal diagnosis: prenatal diagnosis to preclude sets of sick siblings and the identification of heterozygous individuals-and the mothers' positive view of this. I then explain how NSCF is changing views on generalized prenatal screening extended to the whole population, through the idea of taking action early on: above all the views of mothers (or parents) of children screened positive for the disease, who openly evaluate their child's life and, to a lesser extent, the views of the parents of children who screen negative.

Presentation of the study

This research is part of a study of the scientific, political and moral issues involved in NSCF (Vailly 2013). A professional association called the Association Française pour le Dépistage et la Prévention des Handicaps de l'Enfant (AFDPHE; French association for screening and preventing disabilities in children) is responsible for all newborn screening practiced in France. Most of its members are pediatricians and, to a lesser degree, geneticists. Children who screen positive are cared for and followed up in specialized treatment centers called Centres de Ressource et de Compétence de la Mucoviscidose (CRCMs), most of them located in hospitals and staffed by pediatricians, geneticists, physical therapists, etc. My research is based on a seven-month field study conducted in 2005 in a CRCM at a major hospital in the greater Paris metropolitan area. In order to answer the question asked above, I simultaneously studied the -spaces‖ of pediatrics and genetics. When it is established that a screened child is a carrier of one or two genetic mutations, the parents are encouraged by the pediatrician to attend an appointment with the geneticist.

The study is based firstly upon observations of pediatric and genetic consultations for cystic fibrosis (128 observations, of which 91 in pediatrics and 37 in genetics). In the center where the study was carried out, the consultations for cystic fibrosis in connection with NSCF are not separated from those in connection with diagnosis from symptoms before screening was implemented. For this reason, approximately one third of the consultations observed were directly linked to NSCF while two thirds were linked to symptom-based diagnoses.

The study is also based on interviews with the mothers of the young children screened at birth and with the clinicians (pediatricians and geneticists) of the CRCM (22 interviews). I interviewed the mothers of screened children whose consultations I observed (12 interviews). 6 These interviews consisted in retracing in detail each stage of the newborn screening and related follow-up in the case of illness. They also enabled me to obtain the mothers' overall assessment of screening and certain sensitive aspects linked to evaluating the patients' lives.

Comments by fathers directly involved in the medical follow-up of their child and expressing a desire to be present at the interview were included in the research study. The children with cystic fibrosis whose parents I interviewed were all under two years of age. Given that newborns in France are systematically screened for cystic fibrosis, that all children who have tested positive are sent to specialized centers, and that France's universal health insurance pays for almost all treatment, the families I studied represent a wide range of socio-economic situations.

All clinicians of the center (pediatricians and geneticists) were interviewed, including those whose consultations I observed (10 interviews). These interviews focused more specifically on their practices, with the emphasis on how these had changed due to NSCF, on their assessment of this screening and on the patients they were treating.

A methodological point that should be underlined is that the respondents' questions surrounding the absence of generalized prenatal screening, which I will look at later, always came up spontaneously, with no prior allusions on my part. In order to fully understand these, it is important to know that in France pregnancies may be terminated for medical reasons up to term; there is no legal time limit.

The analysis forming the basis for this article was performed as follows: I noted and classified the various occurrences of what was said about the link between newborn screening and prenatal tests (or screening) and about related points, such as the evaluation of life. A common method for qualitative surveys was applied that consists in adjusting the analysis while investigations go forward. In this way, theoretical notions can be reformulated and hypotheses are generated [START_REF] Glaser | The discovery of grounded theory[END_REF].

Finally, this research also calls upon the study of various documents linked to the study (information leaflets on newborn screening, national statistics, etc.).

When newborn screening extends the likelihood of prenatal diagnosis

The first point of intersection between the quest for good health and the elimination of poor health around birth in fact entails a shift from one to the other. In this section I shall look at how this shift materialized in acts, the channels through which it operates and the foundations upon which it is based.

First, it is necessary to underline that the -quality of life‖ question is mentioned in most of the written material promoting NSCF. An information sheet on newborn screening distributed to parents in maternity hospitals and clinics specifies that -early, rigorous treatment and followup [...] ensure a higher quality of life for the patient‖ (AFDPHE 2001). Moreover, the expression "quality of life" was notably used in the press release given to the media when the AFDPHE announced the launch of NSCF. It stated: "It is important to screen [for cystic fibrosis] as early as possible, in order to improve the quality of life of screened children and increase their life expectancy" (Assurance Maladie -Sécurité Sociale 2000). This means that as far as physicians are concerned, treating patients early and appropriately is a means of ensuring they will have the best health possible.

But despite treatment efforts, young patients' problems often become more complicated with time. The number of treatment programs and hospitalizations rises as lung infections become chronic. Worse yet, everyone involved-patient, parents, doctors-are in close contact with the tragic dimension of medicine, the fact that we are all mortal [START_REF] Fox | Medical uncertainty revisited[END_REF]. However the picture is not always so grim. Some adolescents (relatively few in number) do well, and it is hard to imagine they are sick. Given this complex overall picture, the question arises of evaluating a life in which medical treatment looms so large. And the first question is how to proceed during possible future pregnancies.

Before NSCF was set up, when a couple had two children in quick succession the second child might also have the disease whereas the first had not yet been diagnosed with it. Today, newborn screening allows for early diagnosis of the first child, making prenatal diagnosis available for any second pregnancy to ensure that the potential sibling will not have the disease too. Parents of a child who has screened positive and who wish to have another child are encouraged by the CRCM pediatrician to consult a geneticist for a prenatal diagnosis, as attested by the following interview excerpt:

-I told [name of the pediatrician] that I was pregnant and she got an appointment for me right away with the geneticist‖ (Mother 1).

During my hospital field study, the three mothers whose first child had screened positive for cystic fibrosis requested prenatal diagnosis during their second pregnancy (in all cases the fetus tested negative for the disease). With their experience of the illness, which I will come back to later, none of them envisaged giving birth to another sick child. Two of them notably said in interviews:

-I wouldn't put him through that‖ [I wouldn't put my child through that illness]‖ (Mother 1).

-Anyway, I think I would have made it go away [je l'aurais fait partir in French] because I'd had too many problems [with the first child]‖ (Mother 2).

Given these results, two initial remarks should be made. The first derives from the fact that some studies, though few in number, show wide differences in parents' point of view after the birth of a sick or a disabled child. Certain studies have found that parents are likely to feel that carrying out a prenatal diagnosis on the fetus of a possible second child would indicate rejection of the first, sick or disabled child, while others have found that these parents are more likely than the population at large to say they would have an abortion (Wertz et al. 1991). A study conducted in a rural area of the United States shows that most mothers would be against carrying out prenatal genetic diagnosis after the birth of a first, disabled child [START_REF] Kelly | Choosing not to choose: Reproductive responses of parents of children with genetic conditions or impairments[END_REF]). However, it is important to know that in France more than 80% of women carrying a fetus with a diagnosis of cystic fibrosis (most of whom have already given birth to an affected child) choose to have an abortion (Agence de la biomédecine 2010). This shows the extent to which the French sociological context is more favorable to prenatal diagnosis than that of rural zones in the United States. These figures suggest it is preferable to indicate specifications for the genetic disease in question (perceived seriousness, recurrence rates, whether it is a physical or mental disorder, etc.) and the context in which the study is being conducted (country, time period, etc.) rather than using somewhat general terms such as -handicap,‖ as is often the case in the literature. The second remark is linked to the fact that, as Shirley [START_REF] Hill | Motherhood and the obfuscation of medical knowledge: The case of sickle cell disease[END_REF] rightly notes, people define health problems differently depending on social and cultural origins, as attested by the fact that mothers of African origin are less interested than others in prenatal diagnosis of sickle cell disease. It would therefore be useful to supplement my research with surveys of non-European populations, keeping in mind that European populations are overrepresented in the case of cystic fibrosis [START_REF] Scotet | Evidence for decline in the incidence of cystic fibrosis: A 35-year observational study in Brittany, France[END_REF]).

In any case, a second pregnancy after the birth of a first child who has screened positive for cystic fibrosis represents an initial point of intersection between the quest for good health and the elimination of poor health. 7 When it comes to family histories and caregivers' follow-up of second pregnancies, the prenatal approach is mixed in with the newborn screening-early treatment approach due to the family nature of genetic diseases. Mara [START_REF] Buchbinder | Medical technologies and the dream of the perfect newborn[END_REF] also note this result in their study of newborn screening for metabolic diseases in the United States. More specifically, these authors look at both the dream of the -perfect child‖ and what links or differentiates newborn screening and prenatal diagnosis.

From the point of view of the links between the two, they concentrate on the question of second pregnancies after the birth of a first affected child. However, this is far from the only intersection of the two approaches.

Another point of intersection is -heterozygous‖ individuals-that is, carriers of a genetic mutation; in the case of cystic fibrosis, this means they themselves do not have the disease (to have it, they would have to have two mutations). For technical reasons that need not be explained here, NSCF identifies approximately 2% (400 to 500 children) of all heterozygous children born in France every year. People who, as newborns, screen heterozygous for cystic fibrosis and later wish to have children themselves will be able to request a genetic test.

Likewise, relatives (uncles, aunts, cousins, etc.) of a child who has screened heterozygous are likely to be urged, probably by the child's parents, to consult a geneticist for prenatal diagnosis should they wish to have children. Two pediatricians said to parents of heterozygous children during appointments in connection with NSCF:

-You should inform your brothers and sisters [that they could be heterozygous], you shouldn't adopt the ostrich policy‖ (Pediatrician 1).

-She [the baby screened at birth] is a carrier, she has one normal gene […]. Perhaps the couple might consider doing a test when she wants a child‖ (Pediatrician 2).

The fact that some heterozygous individuals are identified through newborn screening thus induces the possibility of new prenatal diagnoses being carried out at some future time. The mothers I interviewed expressed a positive view of screening for heterozygotes. They said notably:

-That information is important; it's important to know that you've got it in the family [...]. It's important for collateral relatives who want to have children‖ (Mother 3).

-It's true that I find that afterwards you feel uneasy, but it's good to know it‖ (Mother 4).

Contrary to the previous case of a second pregnancy following the birth of a first child with the illness, here, for the most part, the families do not have any experience of a child suffering from cystic fibrosis. They do know enough about the illness, however, to consider that information regarding heterozygosity is interesting. For example, one mother of a child screened as a heterozygote said in an interview: "You don"t have a child so that he"ll be unhappy though. Even if for some people cystic fibrosis isn"t a big deal, for me it"s huge. A child who can"t run, who"s immediately out of breath, it would have been really painful for me" (Mother 5).

In sum, NSCF seems to extend the possibilities of prenatal diagnosis. This initial intersection between the quest for good health and the elimination of poor health therefore leads to a shift between the two. Three characteristics can be highlighted: in practice, its most frequent result is prenatal diagnosis; the channel for this shift is a pre-identified genetic mutation, which establishes a technoscientific link between individuals; it is grounded in evaluating the lives of the children who screen positive. More specifically, what the brochures and statements express as an improvement in the quality of life of those affected is, as an indirect result, linked to practices of prenatal diagnosis that imply an evaluation of future life: it is not simply a case of providing the best possible care, it is also a case of considering the contingency of existence itself. This is also the caseand to a greater extentwhen we consider the next point of intersection, to which we shall now turn.

Playing for time and evaluating life

The point of intersection at stake here, between the two approaches before and after birth, also entails a shift from the quest for good health to the elimination of poor health. However, I shall show that in comparison with the previous situation, it does not have the same practical results (it does not result in an individual prenatal diagnosis), it works through a different channel (it is not based on genetic mutations) and its foundations are expressed slightly differently (it rests on an even clearer expression of the evaluation of the lives of the sick or disabled).

Firstly, as the information sheet cited above suggests, it is important to underscore that having a quality of life thanks to NSCF consists above all in providing adequate treatment early (-early, rigorous treatment [...] ensure a higher quality of life‖). However, this argument regarding timeframe has been taken further. During the study, a substantial proportion (nearly half) of mothers or parents of screened children-and an even greater proportion (two-thirds) of mothers or parents of a child who screened positive-had questioned clinicians about why the test was not carried out during pregnancy. They also expressed this question in the interviews during which timeframe emerged as a key topic once again. For example, just after her son screened positive, one mother explained from the very beginning of the interview:

-We lost a lot of time, […], it's a shame not to do it [screening] before‖ (Mother 6).

When fathers were present during the interviews or observations, they sometimes expressed the same wish:

-I don't know why it wasn't done before [slight laughter]. […] It's good that it's done, but shouldn't it be done before?‖ (Father 1).

Lastly, one of the mothers whose child screened negative expressed the following question on this subject during the interview:

-It would be good, I think, if we tried to see if we couldn't detect some diseases earlier, when the amniocentesis is done‖ (Mother 5).

It is very much as if the concern for early detection that infuses the entire newborn screening process had been extended backward into the prenatal period. This situation is not specific to the center I studied, since geneticists from other areas in France raised the same question during meetings and interviews. This issue can be considered from a historical perspective, because the reasoning that these mothers are reproducing is age-old among French doctors. As early as the seventeenth century, a discipline called -callipédie‖ (the art of bearing beautiful children) was devised to handle problems relating not only to birth and early child-raising but also to pregnancy [START_REF] Carol | Histoire de l'eugénisme en France[END_REF]. In the late nineteenth century, medical disciplines such as pediatric nursing and venereology gradually led pediatricians to move progressively backward in time to consider pregnancy and ascendants in their attempts to explain and combat certain pathologies (Ibid. 1995). There is, therefore, a body of historical evidence suggesting a tendency to follow this path backward in time and this tendency is consistent with what we are seeing in the field today.

Secondly, once the idea of screening all fetuses is put forward, the question of the child"s future life and of evaluating that life is raised. During an interview one mother said: "It would be good to know if there"s a disease, honestly, it"s a very particular way of life, it"s quite hard. […]. To be honest, on top of it if they could do […] just a blood test when a woman is pregnant. If it"s explained properly to her afterwards, because it"s really… Just now […] he seems fine, but you know it"s not always easy" (Mother 1).

A mother interviewed just after screening said: One father, after have argued in the interview for generalized prenatal screening, continued:

-You're going to have to take care of him for a whole lifetime‖ (Father 1).

After having expressed regret regarding the lack of generalized prenatal screening, the mother of a child screened at birth concluded:

-The child himself is not happy" (Mother 5).

Obviously the issue conflicts with the attachment and love parents feel for the child that has already been born. At the same point during the interview, they also said:

-I'm not sorry I had my son. [...] Today he's here, I love him, he's my child‖ (Mother 4).

-If I had to do it over again [respondent points to her sick child], I'd still have this one‖ (Mother 1).

In one case, the father could not actually bring himself to utter what would probably have seemed to him a negation of his daughter's existence-a daughter whom he cares for very attentively-saying simply:

-If they had told us [before birth], ‗Your child has cystic fibrosis'... I don't know…‖ (Father 2).

In the end it was his wife who expressed their common wish for general prenatal screening. The value of the child is sometimes reasserted at the same moment, as in the case of a mother who could not hold back from adding about her sick son: -He's still a great little guy‖ (Mother 1).

Lastly, parents occasionally see a connection between the difficulties faced by sick children and their parents, on the one hand, and the socio-economic environment of the family and the country's social policies on the other. In doing so, they make it possible to distinguish the issue of insufficient social integration of sick or disabled people from that of the limitations of biomedical treatment:

"I"m from family where I get a lot of help. But if you take the case of people who are a lot more underprivileged […], it"s really a huge blow" (Mother 6).

"Someone who doesn"t have very much money, who finds herself with a child like that, in terms of aid, you can"t really say we get much help […] overall" (Mother 5).

Thus, another shift from one approach to the other is due to the fact that NSCF has changed people's thinking on mass screening for pregnant women. In other words, the -regime of entrenchment‖ (Koch and Stermerding 1994) of NSCF facilitates the appearance of generalized prenatal screening. Nonetheless, differences must be noted in comparison with the previous point. First, this further intersection does not result in individual prenatal diagnosis, but rather in a demand for mass screening. Second, it is channeled through the question of timeframe rather than the question of mutations (when a more or less serious mutation has already been identified within a family). Given that the major concern in NSCF is early detection, it is not surprising that a substantial proportion of mothers of screened children follow this approach to its logical conclusion, expressing surprise that the screening was of newborns-and therefore, according to them, already came too late. From the point of view of timeframe, it should nonetheless be underlined that it is possible that the mothers' viewpoints will change progressively as they move away from the moment of birth and as the child grows-a question that would require another research study. 8 This seems consistent with criticisms against prenatal diagnosis made by the disabled rights movement in the United States [START_REF] Erik | Prenatal testing and disability rights[END_REF].

Finally, although, like in the previous case, this shift is grounded in an evaluation of the child's life, mothers (or parents) make this evaluation all the more because they are justifying the request of a practice that is currently unavailable. This should be linked to the fact that, "We do a prenatal diagnosis because they have a first child with cystic fibrosis and two children with cystic fibrosis, even though we don"t know how the illness will evolve in that child, it"s a lot for one family" (Geneticist 2).

Traditionally, as numerous authors have underlined (in particular [START_REF] Lauritzen | Normality, risk and the future: Implicit communication of threat in health surveillance[END_REF] the question is problematized in terms of the risk of giving birth to another sick childa risk that is considered to be high because, for a recessive disease like cystic fibrosis, it is of 25%.

For example, one geneticist said in an interview:

-I tell people: you have a high risk of having a pathological pregnancy‖ (Biologist and Geneticist 1).

The practice consisting in identifying heterozygous children (who are not ill) at birth and informing their parents and, through them, their wider family is perceived in a more complex fashion by clinicians. For some of them, it is seen as positive as it could allow an increasing number of heterozygotes to be identified and, in the end, could avoid suffering. As one of the geneticists interviewed put it:

-You could say that treatments for this disease are actually relatively ineffective so this will be a means [...] of eradicating the disease. [...] I think it's a good thing for people to be aware of the possible risk of having a child who would be sick‖ (Biologist and Geneticist 1).

However, most clinicians, whether pediatricians or geneticists, perceive such identifications negatively, for several reasons. First, the aim and indeed the very sense of their own actions is at stake: detecting heterozygous individuals is not the same thing as identifying potentially sick persons for the purpose of treating them; instead it means detecting a genetic characteristic that may lead to a prenatal test. In other words, this practice is likely to shift their attention from the living, suffering child (the patient) toward descendants of the future adult and his or her existing family (heterozygous individuals):

-Diagnosing heterozygotes [...] is a necessary related consequence that cannot be neglected, but it's a problem. Let's just say it raises questions‖ (Pediatrician 2).

Second, physicians may not feel comfortable about the developments that their own practices seem to be facilitating or pushing forward. As they see it, identifying heterozygous individuals at birth and informing parents amount to identifying a rising number of heterozygous individuals, and some fear that as the information gets passed from relative to relative this may lead to mass screening for heterozygotes or -eugenics‖:

-We're following a fairly incredible line of logic here, where newborn screening for cystic fibrosis actually amounts to undisclosed mass [prenatal] screening‖ (Geneticist 1).

When biomedical actors feel that the meaning of their work could change or that it could have large-scale consequences, they raise questions about heterozygotes that seek to break down this link between the quest for good health and the elimination of bad health. In doing so, although they express it differently, they associate the identification of heterozygotes with a form of -flexible eugenics‖ [START_REF] Taussig | Flexible eugenics: Technologies of the self in the age of genetics[END_REF]; i.e., eugenics arising from tension between the sum of parents' individual choices and a tendency to normalize fetuses through genetics. In this regard, the history of eugenics in France, distinctive in two respects, sheds useful light on this phenomenon. First, to the extent that eugenics was defended in France, its advocates were physicians and not statisticians and biologists, as in other countries [START_REF] Carol | Histoire de l'eugénisme en France[END_REF]. This explains in part why it never developed very fully in France. At the moral level, strong eugenics-i.e., eugenics that would eliminate sick persons-ran contrary to both the personal convictions and professional ethos of physicians. At the professional level, a state policy of eugenics would have gone against physicians' liberal practice, threatening their freedom of action, prestige and income (Ibid. 1995). As for private or family eugenics, it never found partisans in France. The relatively weak historical presence or attractiveness of eugenics in that country helps to understand at least in part today's French context, in which the elimination of poor health on a mass scale remains a sensitive subject of the sort that is instrumental in forging an ethos. These remarks allow a better understanding of the following point.

Regarding the link with generalized prenatal screening, this leads us back to the timeframe argument for early screening. In my interviews with clinicians, some explained that patients diagnosed at the age of six or seven might be experiencing much poorer health-due to lack of appropriate immediate attention-than if they had been diagnosed earlier. More generally, as anthropologist Patricia Kaufert put it (2000, 176): -The temptation, particularly for clinicians, is to continually push back the boundaries and ‗find' the disease at an earlier stage.‖ However, none of the pediatricians and geneticists I met with in the hospital openly advocated screening the fetuses of all pregnant women for cystic fibrosis. One geneticist did say during an interview that he wondered whether, given the sums of money spent on newborn screening, "it would not actually be a good idea to screen during pregnancy," immediately adding that that would "smack of eugenics, not eugenics, but it would be a little disturbing to prevent all those children from being born" (Geneticist 2). The same geneticist said in passing to parents during a consultation:

-We screen at birth. It would perhaps have been better to do it pre-natally, but that's how it is‖ (Geneticist 2). Does this mean that newborn screening is changing professionals' views of prenatal screening? Yes, partially, but the possible association between prenatal screening and eugenics (or a similar idea) controls any impulse to generalize such screening. And this in turn makes it difficult to defend prenatal screening, or even utter the idea, because of moral values.

National statistics for France confirm that the above-cited principles are indeed practiced.

Approximately 560 prenatal fetal tests in connection with cystic fibrosis were carried out in France in 2009, leading to approximately 50 pregnancy terminations for medical reasons 20 (Agence de la biomédicine 2010); 180 sick babies were born. In the region of Brittany, where NSCF was implemented as early as the 1980s, a study shows a significant drop of approximately 40% in the incidence of cystic fibrosis, linked to prenatal diagnoses (all techniques included) [START_REF] Scotet | Evidence for decline in the incidence of cystic fibrosis: A 35-year observational study in Brittany, France[END_REF]. More broadly, it should be underlined that the decrease in incidence of cystic fibrosis linked with NSCF is not specific to France, as it has also been observed in regions of Great Britain and Australia (Ibid. 2012). To come back to the French case, clinicians consider prenatal diagnosis to be legitimate to such an extent that it affects the size of the sick population, but only on condition that a certain proportion of affected children are allowed to be born.

In short, for most clinicians the shift from the quest for good health and the elimination of poor health is considered as legitimate as long as it takes place at the individual level, not at the level of health policy. This is part of an individuation process that is familiar to sociologists and historians of biomedicine (Clarke et al. 2003;[START_REF] Turner | Changing concepts of health and illness[END_REF]. The fact that this shift does not exist within the framework of a generalized health policy is linked to the fact that the ethical framework places an obstacle between two, thus replacing the channels previously observed. According to the majority position, the recognition of ethical obligations is encouraged notably by professional deontology (the role of the doctor is to treat patients) and/or law (French law restricts genetic tests). But that view is not unanimous amongst the professional caregivers. Some of them defend a different view by emphasizing their desire to reduce suffering by promoting the eradication of the disease before birth. The two sides to this tension show that the aim, or in other words the -ethical practice‖, is always to avoid suffering, but that beyond this shared goal, the means or -ethical work‖ through which to achieve this are varied and sometimes even opposed: taking the elimination of poor health even further, with a view to eradication, can be seen as either legitimate or illegitimate.

Conclusion

The starting point for this text was the question of the sociological knot of birth, located at the intersection between the question for good health for persons suffering from genetic diseases and the elimination of poor health for fetuses. My study shows that there is not simply a contradiction between these two approaches but in fact a tension between this contradiction and a relationship where one can lead to the other. The first part of this tension comes from the ethical reservations of clinicians who are alarmed by the risk of eugenics, as analyzed above. The second rests on the fact that the threshold of birth is becoming less marked in particular due to the temporal link that can be drawn between the fetus of 8.5 months and the 1 month-old newborn. This continuity is accentuated by similarity between technologies used (when looking for mutations in children or fetuses). Finally, the study shows that this shift between the two approaches is grounded in a transition from the notion of -quality of life‖, which is foregrounded in newborn screening, to the notion of evaluating life. And this last point warrants close attention.

Generally speaking, it should be noted that the notion of "quality of life" informs and infuses increasing numbers of discourses today [START_REF] Leplège | Qualité de vie (Mesures de la)[END_REF][START_REF] Armstrong | Health-related quality of life and the transformation of symptoms[END_REF]. It is linked to the historical movement outlined in introduction to integrate health, life and welfare into political strategies [START_REF] Foucault | Dits et écrits[END_REF]): understanding that it is possible to determine what policies are particularly effective in increasing general and collective welfare was what made it possible to devise and implement means of measuring "quality of life" [START_REF] Leplège | Qualité de vie (Mesures de la)[END_REF]).

Moreover, the question of the value attributed to people's lives arises in connection with all biomedical techniques that require assessing -quality of life‖ in order to make informed decisions about what actions should be taken. This is clear from the scientific and social debates around choices to be made in matters of euthanasia, neonatal resuscitation, amniocentesis and prenatal diagnosis. Particularly because genetic diseases are hereditary, they elicit concern about the lives of family members who have or, in the case of descendants, might have the disease and about the health or welfare of future children [START_REF] Petersen | The best experts: The narratives of those who have a genetic condition[END_REF][START_REF] Ehrich | Social welfare, genetic welfare? Boundary-work in the IVF/PDG clinic[END_REF]). 9 This explains the view of some sociologists and anthropologists that behind prenatal diagnosis lurks the question of what kind of life is worth living [START_REF] Landsman | Emplotting children's lives: Developmental delay vs[END_REF][START_REF] Press | Why women say yes to prenatal diagnosis[END_REF]. It should be clear that what is at stake in all these questions not only encompasses but exceeds the -quality of life‖ issue. Because of the connection with prenatal diagnosis, what is at stake actually includes both the living being and life itself. This is why I propose to exchange the concept of -quality of life‖ (qualité de vie) for the notion of -a quality life‖ (vie de qualité), as it is that notion that seems to be at the heart of people's practices. In view of the results presented, it seems to me that the notion of quality life offers a way of understanding some of the practices of biomedicalization that are currently undergoing change [START_REF] Clarke | Biomedicalization: technoscience, health, and illness in the U[END_REF].

For these different reasons, and despite the fact that prenatal and newborn approaches are enacted by different types of specialists using different intervention modes and that they have different social effects, it is not really tenable to separate them entirely in our increasingly medicalized societies. A constitutive element of the articulation is therefore linked to the aim of ensuring good health in wealthy nations, whether this is carried out before or after birth.

Families are under the surveillance of both obstetricians and pediatricians, and my study shows that we are not dealing with mere parallel advances in two different techniques but a causal link between the two. There are situations where an increasingly demanding fetal selection approach and increasingly attentive patient care converge. Against the widespread understanding that social inclusion of disabled persons is antagonistic to the exclusion of -sick‖ fetuses, the quest for good health and the elimination of poor health do not seem to neutralize each other but rather to bolster each other: the more attentive we are to including sick or disabled persons, the more likely we are to exclude fetuses. Some add concerns about or accusations of -eugenics‖. I would not use that term in this context because, following Nikolas [START_REF] Rose | The politics of life itself[END_REF], I see today's policies and practices as complex and new enough to deserve their own vocabulary. What my field study suggests is that the tension seems to be shifting in favor of a move backward in time-toward the fetus, in connection with the idea of early diagnosis that permeates all of current biomedicine [START_REF] Grimes | Uses and abuses of screening tests[END_REF]. The future will tell whether or not this observation is well-founded. 4 . Cystic fibrosis is usually characterized by severe respiratory and digestive disorders, though the severity of these disorders varies greatly. Life expectancy in France for a person with cystic fibrosis is approximately 37 years. 5 . Ian [START_REF] Hacking | Seminar "Façonner les gens[END_REF] takes up the term used by psychiatrist Ronald David Laing, according to which psychosis can sometimes be considered as the result of intertwined and contradictory desires.

6 . More often than not, several observations of consultations were conducted with the same family, which explains the difference between the number of interviews and the number of observations.

7 . The so-called "mild" forms of cystic fibrosis diagnosed through screening at birth, which usually result in minor symptoms (pancreatisis, male infertility, etc.) or even no symptoms at all, are a notable variant to this situation. As I have shown in another article, they offer a point of intersection between the newborn and the prenatal grounded in an extension of the idea of abnormality to screened newborns, and to later pregnancies [START_REF] Vailly | The expansion of abnormality and the biomedical norm: neonatal screening, prenatal diagnosis and cystic fibrosis in France[END_REF]). 8 . In support of this idea we have [START_REF] Landsman | Emplotting children's lives: Developmental delay vs[END_REF] result that once mothers have understood that their child will probably never correspond to the notion of a -normal‖ child, most reassess the meaning and value of normality, becoming critical of a discourse that would diminish the value of their child. 9 . A significant example of the growing influence of biomedicine in this matter is suggested by in vitro fertilization and pre-implantation genetic diagnosis in Great Britain. Those practices were subject to a law requiring that the welfare of children so produced be assessed beforehand by a medical unit using medical and social criteria [START_REF] Ehrich | Social welfare, genetic welfare? Boundary-work in the IVF/PDG clinic[END_REF]).

Finally

  , I analyze the clinicians' positions on the following three points in relation to their ethical framework: prenatal diagnosis to preclude sets of sick siblings, identification of heterozygous individuals and generalized prenatal screening. In sum, these different results show how the quest for good health and the matter of eliminating poor health are linked and reinforce one another. In conclusion, I engage a more general discussion about the stakes of these results and in particular what I suggest calling a -quality life‖.

"

  You really don"t want to give birth today […] to a child who"s going to become an adult who"ll already have a much heavier burden to carry than the others. You live from it [live with it], of course, but you take away the evolution to freedom from people […]. It really is quite a blow. […] I think if I"d known before, yes I wouldn"t have kept my baby […]. Having a sick child is quite something" (Mother 6).

unlike in other studies suggesting that the value of other people's lives, namely for those persons' relatives, is implicit or fragmentary [START_REF] Fassin | Evaluer les vies[END_REF][START_REF] Gaille | La valeur de la vie[END_REF], here this evaluation is most often expressed with great clarity. In return, this clear formulation then leads the parents to feel the need to also reaffirm their love for their child. Gail [START_REF] Landsman | Emplotting children's lives: Developmental delay vs[END_REF] has explained that mothers of disabled children find themselves caught up in a paradox, simultaneously saying they love their children and that they would do anything to change them (i.e., remove the disability). Along the same lines, the mothers of screened children suffering from cystic fibrosis find themselves in a paradoxical situation, as they are simultaneously involved in combating the disease, loving the child that has it, and evaluating that child's life.

Clinicians' "ethical practice" and "ethical work"

The clinicians' points of view remain to be analyzed. These will allow another point of intersection to be highlighted that is not a shift but rather a tension between two elements.

While the first of these two elements overlaps with some of the aspects analyzed above, the second is quite different and will lead me to outline the ethical questions that the clinicians may express as they develop their practices. Basing myself on Mitchell [START_REF] Dean | Governmentality: Power and rule in modern society[END_REF] analysis of -ethical government‖ (in Michel Foucault's sense of the word) my analysis will focus on -ethical practice‖ (what is the aim of an action, in an ethical framework) and -ethical work‖ (how do the relevant actors work within an ethical framework).

The practice consisting in offering a prenatal diagnosis to a mother who has given birth to a first child diagnosed with cystic fibrosis does not give rise to much debate amongst clinicians, given how difficult caring for a sick child can be both for the family and the patient. One geneticist said in an interview: 1. This study was funded by the GIS-Institut des Maladies Rares. The initial text was translated by Amy Jacob and a later version was revised by Lucy Garnier. I would like to thank the anonymous reviewers for their comments on a previous version of the article.

2 . By definition, screening means identifying individuals within a given population who are at risk for a disease (in which case screening is followed by a diagnostic confirmation test) or who already have it without being aware of it.

3 . See the website of the National Newborn Screening Status Report: http://genes-rus.uthscsa.edu/sites/genes-r-us/files/nbsdisorders.pdf