O n the concept of eugenics:
preliminaries to a critical appraisal
So b re o c o nc e ito d e e ug e nia:
p re liminare s à uma avaliaç ão c rític a
1 In stitu to d i Filosofia, Fa colt à d i Scien z e d ella Form a z ion e, Un iv ersit à d egli St u d i M essin a . Via Con cez ion e 8- 98100, M essin a , It a lia .
Dem et rio N eri 1
Abst ract Th is p a p er’s m a in issu e is lin k ed t o w h a t ca n b e foreseen a s t h e in crea sin g ca p a b ilit y of m ed ical gen et ics t o m od ify t h e gen et ic com p osit ion of t h e h u m an sp ecies t h rou gh d irect in t ev en t ion s in t h e h u m a n gen om e for m ed ica l a n d n on - m ed ica l p u rp oses, i.e., t h e ‘risk ’ of a resu r-gen ce of eu r-gen ics. In cu rren t d iscu ssion s on t h e t op ic (b riefly p resen t ed in t h e first sect ion ), t h e ‘p h a n t o m o f eu gen i cs’ i s ra i sed sev era l t i m es, b u t t h ere i s a grea t d ea l o f co n f u si o n o n w h a t cou n t s a s eu gen ics, p a rt ly b eca u se of b roa d con cep t u a l d isa greem en t ov er t h e n ot ion it self. Fu rt h erm ore, a ccord in g rt o som e sch ola rs rt h ere is n o h op e of ov ercom in g rt h is u n sa rt isfa crt ory con cep t u a l u n cert a in t y. Pa rt ly ch a llen gin g t h is op in ion , t h e secon d a n d t h ird sect ion s of t h is p a p er a t -t em p -t -t o id en -t ify som e ba sic fea -t u res w h ich cou ld be seen a s in -t rin sica lly lin k ed -t o -t h e n o-t ion of eu gen ics, w it h t h e aim of red u cin g t h e ran ge of con cep t u al d isagreem en t as a p relim in ary st ep in brin gin g in t o focu s w h at ex act ly is w ron g w it h p ract icin g eu gen ics. Th e su bsequ en t sect ion s d eal w it h t h e su bst an t ive issu e of w h et h er or n ot t o p ract ice eu gen ics from t h e p oin t of v iew of t h e in t erest of fu t u re gen era t ion s in t h e h u m a n sp ecies’ gen et ic com p osit ion . T h e m a in m ora l a rgu -m en t s for a n d a ga in st eu gen ics a re ex a -m in ed fro-m t h e p oin t of v iew of ou r ob liga t ion s t ow a rd s fu t u re gen erat ion s, an d t h e con clu sion is in favor of a cau t iou s ‘op en -d oor’ p osit ion .
Key words Eu gen ics; Gen et ic En gin eerin g; Bioet h ics
M edical genetics and the ghost of eugenics
In 1945, d u rin g a le ct u re a t Co rn e ll Un ive rsit y, t h e Am e r ica n ge n e t icist La u re n ce Sn yd e r o b -served th a t th e kn owled ge a ch ieved in th e field o f h u m a n ge n e tics h a d a llowe d so m e p ra ctica l ap p lication s to d evelop, wh ile th eir im p ortan ce h a d a lre a d y in d u ce d so m e m e d ica l sch o o ls in t h e Un it e d St a t e s t o o ffe r c o u r se s o n m e d ic a l ge n e tics. Sn yd e r su m m e d u p in five p o in ts th e a ge n d a o f m e d ic a l ge n e t ic s: “[F]irst , gen et ic p rogn osis, t h at is, t h e fu rn ish in g of gen et ic ad -v ice in p rosp ect i-v e m a rria ges a n d p rosp ect i-v e fa m ilies; secon d , d ia gn osis, on t h e b a sis of ge-n et ic d at a, of coge-n d it ioge-n s d ifficu lt t o id ege-n t ify by ot h er m ea n s; t h ird , in st it u t in g of p rev en t iv e m ea su res a ga in st cert a in d isea ses a n d a b n orm a lit ies, on t h e b a sis of sp ecific gen et ic b a ck -grou n d ; fou rth , d eterm in ation of n on p atern ity an d oth er m ed ico-legal p roblem s [...]; an d fifth , recom m en d a t ion of eu gen ic p rogra m s for t h e p rotection an d im p rovem en t of society, a p roblem w h ich can be scien tifically ap p roach ed on -ly w ith a broad u n d erstan d in g of th e in terrela-t ion of h ered iterrela-t y a n d en v iron m en terrela-t” (Sn yd e r, 1947: 114).
Wh e n Sn yd e r wro t e t h e se wo rd s, m e d ic a l gen etics wa s still in its in fa n cy: th e first im p o r-t a n r-t r-t e xr-t b o o k h a d b e e n p u b lish e d in 1940 (Ro b e r t s, 1940) a n d o n e o f t h e fir st (if n o t t h e first) u n ive rsity co u rse s, to wh ich Sn yd e r h im -self wa s a p p o in ted , wa s in a u gu ra ted in 1932 a t t h e St a t e Un ive r sit y o f Oh io. It wo u ld t a ke 60 yea rs b efo re th e Am erica n Med ica l Asso cia tio n recogn ized m ed ical gen etics as a sp ecialty a rea . Mea n wh ile, th e a gen d a of m ed ica l gen etics h a s d ra m a tica lly en h a n ced ea ch of th e p oin ts m en t io n e d b y Sn yd e r. Ge n e t ic co u n se lin g h a s b e -c o m e a m o re a n d m o re wid e sp re a d p ra -c t i-c e a n d , t h a n ks t o t h e in c re a sin g c a p a c it y t o t e st se ve ra l ge n e t ic co n d it io n s, t h e d ia gn o st ic a s-p e c t is e xs-p e c t e d t o b e c o m e in c re a sin gly d is-se m in a t e d in m e d ic a l p ra c t ic e. In fa c t , if it is tru e th a t it is d ifficu lt to th in k of a d isea se with o u t a ge n e t ic co m p o n e n t , t h e n a ll o t h e r m e d -ic a l s p e c ia lt ie s w ill b e in fu s e d w it h m e d -ic a l gen etics. A m ore a n d m ore ca refu l u n d ersta n d -in g of th e d eep m ech a n ism of th e p a th ogen esis o f d ise a se s a n d su sc e p t ib ilit y t o t h e m will a l-low n o t o n ly m o re p re cise d ia gn o se s, b u t a lso d ia gn o se s o f d iffe re n t q u a lit y t h a n in t h e p a st (McKu sick, 1993). Th e ce n tra l q u e stio n will n o lon ger b e ‘Wh a t d oesn’t work?’, a s in tra d ition a l d ia gn o stics, b u t ‘Wh y d id n’t so m e th in g wo rk?’. We will a lso b e a b le t o a n swe r a n o t h e r q u e st io n , ‘Wh y will so m e st h in g n o st wo rk in st h e fu -tu re?’. In th e wo rd s o f Wa tso n (1992), m ed icin e
ca n n o lo n ge r ign o re ge n e s: it wo u ld b e like a d etective tryin g to so lve a m u rd er ca se with o u t lo o kin g fo r th e m u rd erer.
As fo r t h e t h ird p o in t , u n fo r t u n a t e ly (b u t th is is a tra d ition a l fea tu re of m ed icin e) th ere is still a ga p b e twe e n d ia gn o stic a b ility a n d th e r-a p e u t ic cr-a p r-a cit y. Pre ve n t ive m e r-a su re s r-a re st ill ver y p o o r: o rd in a r y m ed ica l th era p ies o r in terven tion s (d iet, d ru gs, tran sp lan t) aim ed at m in -im izin g o r c o n t ro llin g t h e se ve r it y o f t h e e x-p re ssio n o f d ise a se s o r, wh e n t h e co n d it io n is d e t e ct e d e a rly, a b o r t io n . Ne ve r t h e le ss, t h e fu -t u re -t h e ra p e u -t ic p o -t e n -t ia l o f m e d ica l ge n e -t ics is very p rom isin g: for exa m p le, som e sp ea k of a n ew p h a rm a cology a b le to d evelop ‘in d ivid u a l-ize d d ru gs’ (Gilb e rt , 1992), wh ile o f co u rse t h e b ig p ro m ise is gen e th era p y in b o th th e so m a t-ic a n d germ cell lin es (Ca skey, 1993).
Le a vin g a sid e t h e fo u r t h p o in t (t h e u se o f ge n e t ic m e a n s fo r n o n -m e d ica l b u t wid e ly a c-cep ted go a ls), we co m e to th e la st p o in t, wh ere we fin d a ra d ica l ch a n ge : m e d ica l ge n e tics h a s st r icke n fro m it s a ge n d a t h e re co m m e n d a t io n of eu gen ic m ea su res for th e p rotection a n d im p rove m e n t o f so cie t y. Esp e cia lly sin ce t h e b e -gin n in g of th e p roject of m ap p in g an d seq u en c-in g th e h u m a n gen o m e, scien tists a n d m ed ica l gen eticists h a ve ta ken p a in s to su b sta n tia te th e p a ra m o u n t im p o r t a n ce o f t h e p o t e n t ia l m e d -ical ap p lication s of th is ‘b ig scien ce’ p roject an d , a t t h e sa m e t im e, t o fir m ly d isso c ia t e h u m a n gen etics a n d m ed ica l gen etics fro m eu gen ics.
Ro u gh ly sp e a kin g, we co u ld sa y th a t scie n -tists a n d m ed ica l gen eticists h a ve su cceed ed in stressin g th e p o ten tia l b en eficia l im p a ct o f th e clin ica l a p p lica t io n s o f re se a rch in m o le cu la r b io lo gy a n d h u m a n ge n e t ics. Th e a t t e n t io n t o a n d in ve st m e n t s (b o t h p u b lic a n d p r iva t e ) in th e field are in creasin g an d , for exam p le, th e in -te re st o f th e Na tio n a l In stitu -te o f He a lth (NIH ) in th e Hu m an Gen om e Project is fou n d ed on its in stitu tion a l ta sk of fosterin g resea rch a im ed a t im p rovin g h ea lth ca re.
Howe ve r, t h e y a p p e a r t o h a ve fa ile d in t h e effort to elim in a te som e eu gen ic ‘sh a d ow’ from t h e ir wo rk. It is sa id t h a t t h e n a m e h a s b e e n e ra se d fro m t h e a ge n d a o f m e d ic a l ge n e t ic s, b e ca u se o f a b a d re p u ta tio n a cq u ire d fro m th e Na zi e xp e rie n ce, b u t n o t th e th in g itse lf. So m e ca st d o u b ts o n th e sin cerity o f scien tists, h o ld in g th a t m ed ica l gen etics is p a rt o f a m o re gen -era l eu gen ic con sp ira cy h a tch ed by eu gen ic so-cie t ie s, wh ich su cce e d e d in in vo lvin g in t h e ir cryp to-eu gen ic p rogram s n ot on ly m ed ical p ro-fe ssio n a ls, b u t a lso in st it u t io n s like Un e sc o, WH O, etc. (Ca va n a u gh -O’Keefe, 1995).
in g a n d will b e a b le to d o is in trin sica lly eu gen -ic s, re ga rd le ss o f t h e sin c e r it y a n d b e n e f-ic ia l in ten tio n s o f th e p ro fessio n a ls in vo lved ; a n d if h u m a n ge n e t ic s it se lf is ‘d isgu ise d e u ge n ic s’ (Pa u l, 1994); o r, a t lea st, if it is p o ssib le to d ra w a cle a r cu t lin e b e t we e n e u ge n ic a n d n o n e u -gen ic a p p lica tio n s o f h u m a n -gen etics.
M ethodological issues
Wh a t a p p e a r s t o a c c o m p a n y b o t h t h o se wh o re ca ll t h e gh o st o f e u ge n ics a n d t h o se wh o t r y t o e xo rcise it is t h e (a cr it ica l) a ssu m p t io n t h a t e u ge n ic s is a m o ra lly b a d t h in g a n d t h a t h u -m a n ge n e t ics a n d -m e d ica l ge n e t ics h a ve t o b e wa r y o f it . On t h is gro u n d , t h e In t e r n a t io n a l Et h ica l Co m m it t e e o f Un e sco (wh o se p o p u la -tion p olicy is often ch a rged with eu gen ism : it is worth rem em b erin g th a t th e first gen era l d irec-t o r o f Un e sco in 1948 wa s Ju lia n Hu xle y, a fe rve n t e u ge n icist ) in t h e first rve rsio n o f t h e Pre -lim in a r y Dra ft o f a Un ive r sa l D e c la ra t io n o n th e Hu m a n Ge n o m e a n d Hu m a n Righ ts, wh ile re c o gn izin g t h a t ge n e t ic re se a rc h o p e n s u p va st p ro sp e c t s fo r p ro gre ss in im p rovin g t h e h ea lth a n d wellb ein g of in d ivid u a ls a n d of h u -m a n kin d a s a wh o le, st a t e d t h a t “t h e a p p lica tion of gen etic research m u st, h ow ever, be regu -la t ed in ord er t o gu a rd a ga in st a n y eu gen ic p ra ct ice t h a t ru n s cou n t er t o h u m a n d ign it y a n d h u m a n righ t s” (Un e sc o, 1996: 332). Th is sta tem en t gives cred it to th e gh o st o f eu gen ics, b u t a t t h e sa m e t im e in d ic a t e s a ra t h e r we a k b a rrie r a ga in st it : wh o e ve r in fa ct ca n b e in fa -vo r o f so m e t h in g wh ich in fr in ge s h u m a n d ign it y? Iign a la t e r ve rsio ign o f t h e Dra ft t h is iign co ign -c lu sive st a t e m e n t wa s d ro p p e d b e -c a u se, a s Len o ir exp la in s in p resen tin g th is n ew versio n , “eu gen ics is a con troversial n otion , an d yet th ere is little con sen su s on its p recise d efin ition . Prac-t ices Prac-t h a Prac-t som e con sid er Prac-t o b e eu gen ics, oPrac-t h ers m ay n ot”(Len o ir, 1996: 33).
Acco rd in g to Len o ir, th e co n troversy is o n ly co n cep tu a l (wh a t is eu gen ics), wh ile th e m o ra l p ro b lem seem s to b e co n sid ered settled : wh a t-ever ca n b e la b eled a s ‘eu gen ics’ is a b a d th in g. Th is is a co m m o n p la ce in t h e p re se n t d e b a t e. Fo r e xa m p le, in t h e a r t icle q u o t e d a b ove, Pa u l (1994: 67) c o n t e n d s: “W h ile a lm ost ev eryon e agrees th at eu gen ics is objection able, th ere is n o con sen su s on w h a t it a ct u a lly is.” St a t e m e n t s like t h is se e m ve r y u n sa t isfa ct o r y, if n o t in t e r-n a lly ir-n c o r-n sist e r-n t : if it is t r u e t h a t t h e re is r-n o co n se n su s o n wh a t e u ge n ics is, t h e n it ca n n o t b e t r u e t h a t e ve r yo n e a gre e s t h a t e u ge n ic s is o b je c t io n a b le. Ra t h e r, we c a n o n ly sa y t h a t th e re is a se rie s o f ‘wh o d isa p p rove s wh a t’, b u t
th e se rie s a s a wh o le ca n h a rd ly b e in te rp re te d in t e rm s o f n e a rly u n ive rsa l d isa p p rova l o f t h e sa m e t h in g. At a n y ra t e, t h a t st a t e m e n t is t h e st a r t in g p o in t o f a n in t e re st in g p sych o so cio -lo gic a l a p p ro a c h wh ic h , t a kin g se r io u sly t h e a n xiety a b o u t a resu rgen ce o f eu gen ics, tries to eva lu a te wh ich of th e scen a rios p eop le a ctu a lly fe a r wh e n t h e y fe a r e u ge n ics a re like ly, wh ich a re p o ssib le, a n d wh ic h a re im p ro b a b le. I d o n o t d e n y t h e u se fu ln e ss o f Pa u l’s a p p ro a c h fro m th e p o in t o f view o f so cia l p sych o lo gy. My p o in t is t h a t t h is a p p ro a c h le a ve s u n t o u c h e d a n d u n a n swe re d t h e issu e o f kn owin g wh y it se e m s su fficie n t t o la b e l so m e t h in g a s e u ge n -ics in ord er to con clu d e th at it is m orally wron g. Fo r e xa m p le, in o n e o f Pa u l’s sce n a rio s th e u se o f ge n e t ic t e st s will b e co m e in cre a sin gly ro u -t in e, a n d i-t is ‘fe a re d ’ -t h a -t p e o p le c o u ld b e ‘o b liq u e ly’ (i. e., b y t h e h e a lt h in su ra n c e sys-t e m , p o lic ie s, p h ysic ia n s) p re ssu re d sys-t o m a ke p a r t icu la r re p ro d u ct ive d e cisio n s. Pa u l (1994: 75) wr it e s: “Th a t w ou ld q u a lify a s eu gen ics by m ost d efin ition s. It w ou ld in an y case be a very u n h ap p y d evelop m en t.” Bu t wh y? On ly b eca u se o f th e ch a rge o f eu gen ics?
It se e m s t o m e t h a t in t h is wa y t h e d e b a t e a b o u t t h e re a l p ro b le m s o f ge n e t ic t e st s is o b -sc u re d , wh ile I t h in k t h a t t h is is p re c ise ly t h e go a l o f t h o se wh o ra ise t h e gh o st o f e u ge n ics: a s e ve r y re sp e c t a b le gh o st sh o u ld d o, it go e s a ro u n d te rro rizin g p e o p le, ke e p in g th e m fro m t h in kin g, cla r ifyin g issu e s, o r m a kin g d ist in c-tion s.
Th e con cep tu al issu e, even b efore th e m ora l o n e, is th en u n a vo id a b le. I a gree with Pa u l a n d m a n y o t h e r s t h a t t h e n o t io n is c o n t rove r sia l: b u t wh ic h o f t h e n o t io n s c o m m o n ly u se d in m o ra l d isc o u r se s (t h in k a b o u t t h e c a se o f t h e n otion of eu th a n a sia ) is n ot? An im p orta n t p a rt o f d e b a t e s o n b io e t h ica l issu e s is a b so r b e d in t h e a t t e m p t t o re d u ce t h e ra n ge o f co n ce p t u a l d isa greem en t in o rd er to in d ivid u a te th e m o ra l d isa greem en t a s well.
in a so m e wh a t m e t a p h ysic a l fixe d se n se : in -d e e -d , e ve n a ft e r t h e m o st ca re fu l a n a lysis it is like ly t h a t so m e va gu e n e ss will re m a in . Bu t t h is, sin c e Ar ist o t le, sh o u ld n o t wo r r y u s t o o m u ch : in m o ra l d isco u rse o n e ca n n o t h a ve th e p recisio n req u ired in m a th em a tics.
In th e fo llowin g p a ge s I wo u ld like to m a ke a sm a ll co n t r ib u t io n t o t h is wo rk, a t t e m p t in g t o o u t lin e so m e fe a t u re s o f t h e n o t io n o f e u -ge n ics a n d , with m o re d e ta il, to d iscu ss o n e o f t h e m o st im p o r t a n t issu e s: t h e re la t io n sh ip o f eu gen ics to fu tu re gen era tio n s.
Towards a definition of eugenics
To b e gin w it h , t h e n o t io n o f e u ge n ic s c o n -t a in s -t h e ge n e ra l id e a o f -t h e im p rove m e n -t o f m a n kin d , wit h t h e sp e c ific a t io n t h a t t h is im -p rovem en t ca n b e b est a ch ieved th rou gh in ter-ve n t io n s in it s ge n e t ic co m p o sit io n . He re I se t a sid e t h e n a t u re / n u r t u re co n t rove r sy a n d t h e issu e o f ge n e t ic re d u ct io n ism . Do in g e u ge n ics d oes n ot n ecessarily req u ire h old in g th at every-t h in g d e p e n d s o n ge n e s, b u every-t o n ly every-t h e we a ke r a ssu m p t io n “t h a t d ifferen t gen es cou ld giv e u s d ifferen t ch a ra ct erist ics” (Glove r, 1984: 26). I sh all retu rn b elow to th e q u estion of m oral p er-m issib ility to ‘er-m a n ip u la te’ th e h u er-m a n gen o er-m e. If, as I th in k, th ere are n o con vin cin g argu m en ts fo r a ‘h a n d s- o ff’ p o sit io n , t h e n we co u ld sa y th a t it is d ifficu lt to b elieve th a t th e id ea o f im p rovin g t h e h u m a n sp e cie s ge n e t ica lly is in it -se lf m o ra lly d e p lo ra b le. Co n sid e re d in it -se lf, t h is id e a lo o ks ve r y a t t ra ct ive a n d ca n b e se e n a s a so r t o f p ro gre ssive Ut o p ia , t h o u gh t fu l o f th e well-b ein g of m an kin d an d eager to p u t sci-e n csci-e a t its ssci-e r vicsci-e. Rsci-e csci-e n tly, Da n isci-e l Wiklsci-e r a n d Eile e n Pa lm e r, re co gn izin g t h e b a sic h u m a n i-ta ria n im p u lse o f eu gen ics, wo n d ered wh y it is d iffic u lt t o fin d d e fe n d e r s o f e u ge n ic s a m o n g re sp o n sib le le a d e rs o f scie n ce, b io e t h ic s, a n d h ealth p olicy. “Perh ap s,” th ey ad d ed , “a clean ed -u p e-u gen ics w o-u ld h a v e a ch a n ce of w in n in g ad h eren ts” ( Wikler & Pa lm er, 1992: 107).
Clea n ed u p o f wh a t? Clea rly, o f so m e o f th e fe a t u re s wh ic h t h e id e a o f e u ge n ic s a ssu m e d wh e n , a t t h e b e gin n in g o f o u r c e n t u r y, it wa s p rop osed a s a socia l p ra ctice: elitism , cla ss d is-c r im in a t io n , ra is-c ism , a n d is-c o e ris-c io n . On e is-c a n ce r t a in ly sa y t h a t a ll t h e se fe a t u re s h a ve b e e n d e gra d e d ve rsio n s o f t h e id e a a n d , h ist o rica lly sp ea kin g, it is tru e th a t o n ly a m in o rity cu rren t o f e u ge n icist s (p ro p o n e n t s o f t h e so ca lle d re -fo r m e u ge n ic s) h a ve d e n o u n c e d t h e m a n d , even a fter th e en d of World Wa r II, con tin u ed to p rop ose th e n eed for ‘clean ed u p’ eu gen ic m ea -su res. Go o d h isto rica l reco n stru ctio n s o f th ese
tren d s exist (Kevles, 1985), a n d I n eed n ot d well o n t h e su b je c t . Howe ve r, it is im p o r t a n t t o st re ss a p o in t . Be sid e s re fu sin g a n e lit ist a n d ra c ist d r ift , re fo r m e u ge n ic s a lso in sist e d o n th e n e e d to a vo id a n y kin d o f co e rcio n , re lyin g o n vo lu n ta r y a cce p ta n ce o f e u ge n ic m e a su re s. Th is is a ll t h e m o re n e ce ssa r y t o d a y, wh e n re sp ect for in d ivid u a l lib erties a n d in d ivid u a l a u -ton om y in m a kin g ch oices on cru cia l q u estion s h a s t a ke n d e e p ro o t s, a t le a st in o u r We st e r n so cie t ie s. My p o in t is t h a t I t h in k it ve r y d iffi-cu lt to a void a n y form of coercion in p rop osin g eu gen ic m ea su res, b eca u se it seem s to m e th a t t h is ve r y u n p le a sa n t fe a t u re is lin ke d t o so m e in t r in sic ch a ra ct e r ist ics o f t h e id e a it se lf. Le t’s see wh y:
a ) Th e n otion of eu gen ics in volves th e p rin -c ip le t h a t t h e in t e re st o f t h e h u m a n sp e -c ie s m u st b e c o n sid e re d ove r r id in g t h e in t e re st , h o p e s, a n d n e e d s o f in d ivid u a ls. Th e go a l o f eu gen ics is to b en efit th e sp ecies, n o t th e in d i-vid u a ls, th ou gh in th e ca se of p ositive eu gen ics in d ivid u a ls wh o a ccep t to b e m ea n s to th e rea l-iza t io n o f fu t u re m a n kin d d o re c e ive so m e b en efits.
b ) In sp e a kin g o f ‘th e go a l o f e u ge n ics’, I d o n o t re fe r sim p ly t o t h e m e re in t e n t io n t o p ro -d u ce eu gen ic effects. Th e in ten tio n to -d o (a n -d , con versely, n ot to d o) eu gen ics d oes n ot cou n t; wh a t co u n ts a re th e e ffe cts, a n d it is n e ce ssa r y to d e m o n stra te th a t th e ch o se n m e a n s a re sci-e n t ific a lly sci-e ffsci-e c t ivsci-e in p ro d u c in g sci-e u gsci-e n ic sci-e f-fe c t s, i. e., lo n g- t e r m e ff-fe c t s, st a t ist ic a lly e vi-d e n t a t t h e p o p u la t io n le ve l, ivi-d e a lly o n t h e sp ecies a s a wh ole. Wh en I sa y ‘scien tifica lly ef-fe ct ive’ I m e a n so m e t h in g d ifef-fe re n t fro m ‘le t’s d o th a t a n d see wh a t h a p p en s’. Th is is n ot a t a ll ea sy, b eca u se m ea n s h a ve to sa tisfy th e tem p o-ra l d im en sio n req u ired b y a eu gen ic p ro ject.
c ) Th o u gh so m e o n e h a s e n t h u sia st ic a lly t h o u gh t o f t h e p o ssib ilit y o f a ra p id im p rove -m en t th ro u gh th e “con version of all th e u n fit to t h e h igh est gen et ic lev el” (Sin sh e im e r, 1992: 138), it is like ly t h a t t h o se wh o wa n t t o d o e u ge n ics sh o u ld b e a b le to th in k in te rm s o f ce n -t u r ie s, if n o -t o f m ille n n ia . Bo -t h n e ga -t ive a n d p o sit ive e u ge n ic s re q u ire a d e sp e ra t e ly lo n g tim e to p ro d u ce b en eficia l effects a t th e p o p u -la t io n le ve l. Th is is c e r t a in ly t r u e fo r p o sit ive eu gen ics, wh ile p rogra m s of n ega tive eu gen ics, t a rge t in g lim it e d a n d id e n t ifia b le gro u p s o n th e b a sis o f ca refu l gen etic ep id em io lo gica l re-sea rch , ca n h a ve b en eficia l effects in th e cou rse o f a few gen era tio n s.
wh a t kin d s o f co e rcio n o r p re ssu re ca n re n d e r th e m ea n s effective to th e goa ls in th e lon g ru n , I wa n t o n ly to sa y th a t a so cie ty wh ich d e cid e s t o in ve st in e u ge n ic s is n o t like ly t o le a ve t h e p ro je c t t o in d ivid u a l sp o n t a n e it y. It is like ly th a t th is so cie ty d e sire s to se cu re th e lo n g-ru n d e ve lo p m e n t o f t h e p ro je ct . Eve n gra n t e d t h e in it ia l vo lu n t a r y p a r t icip a t io n , it is n e ce ssa r y t o t h in k o f so m e kin d s o f p re ssu re in o rd e r t o e n su re t h a t re p ro d u c t ive c h o ic e s b e a t le a st co n sist e n t wit h t h e go a ls o f t h e p ro je ct . Mo re -ove r, a n y m e a n s o f p re ssu re m u st b e a b le t o m a in ta in th eir effects o n in d ivid u a ls b elo n gin g t o su b se q u e n t ge n e ra t io n s: o t h e r wise t h e a d -van tages of th e p roject wou ld b e in evitab ly d es-t in e d es-t o va n ish . In h is Won d erw om a n a n d Su -p erm an, p rop osin g th e p roject of creatin g a n ew b re e d , J. Ha rr is d iscu sse s a ll t h is in d e t a il, b u t a t th e en d it seem s th a t if we wa n t to a vo id co -ercion , as Harris d oes, th en we can n ot b u t h op e th a t vo lu n te e rs d e ve lo p a so rt o f “cu lt, if n ot of stren u ou sn ess an d selfd en ial, at least of circu m -sp ection an d self-den ial” (Harris, 1992: 201). Th e id ea wou ld h ave p leased Galton , b u t I th in k th at it wou ld b e a p oor assu ran ce for a society wh ich ca n a ffo rd th e h igh co sts o f su ch a p ro ject.
Howe ve r, fo r t h e sa ke o f a rgu m e n t le t u s su p p o se t h a t t h is ve r y c o n t rove r sia l a n d u n -p lea sa n t fea tu re co u ld b e clea n ed u -p, to o, -p er-h a p s ter-h ro u ger-h ter-h e d evelo p m en t o f a so rt o f sec-u la r e sec-u ge n ic re ligio n . Le t sec-u s ssec-u p p o se th e n th a t a e u ge n ic p ro je c t is t e c h n ic a lly fe a sib le, t h a t we fin d a wa y t o re c o n c ile t h e in t e re st o f t h e sp ecies a n d th a t o f in d ivid u a ls, a n d th a t, in th e lon g ru n , too, it cou ld b e im p lem en ted with ou t in fr in gin g in d ivid u a l r igh t s a n d lib e r t ie s. A fin a l q u e st io fin re m a ifin s: wh y sh o u ld we d o e u -gen ics? As it is clea r th a t fu tu re -gen era tio n s a re th e ta rget o f th e b en efits o f a eu gen ic p ro gra m , t h e n o t io n o f e u ge n ics m u st e n co m p a ss 1) t h e in d ica t io n o f wh a t kin d o f in t e re st we ca n re a so n a b ly a ttrib u te to fu tu re gen era tio n s rega rd -in g t h e ge n e t ic c o m p o sit io n o f t h e h u m a n sp e c ie s a n d 2) t h e kin d o f o b liga t io n s, if a n y, t h is in t e re st im p o se s o n u s. Th e first q u e st io n is n o t d ifficu lt t o a n swe r (a lt h o u gh we will se e th a t so m e p ro b lem s a rise a n ywa y). Th e a n swer to th e seco n d q u estio n is m o re co m p lica ted .
Eugenics and future generations
Th e issu e o f o u r resp o n sib ilities towa rd s fu tu re ge n e ra t io n s is o n e o f t h e m o st d iffic u lt c h a l-le n ge s t h a t m o ra l t h in kin g h a s t o fa c e. It is a re la t ive ly n e w ch a lle n ge, lin ke d t o t h e growt h o f o u r kn owled ge a n d a b ove a ll to th e d ra m a tic tech n o lo gica l p ro gress wh ich h a s in co rp o ra ted
th e wh ole b iosp h ere of ou r p la n et in to wh a t we a re re sp o n sib le fo r (Ba ye r t z, 1987). In t h is p a -p e r I m u st t a ke t h e t h e o re t ic a l c o m -p le xit y o f t h e issu e fo r gra n t e d . I o n ly wish t o re ca ll t h a t e n viro n m e n t a l p h ilo so p h y h a s m a d e u s a wa re o f t h e n e e d t o t a ke t h e in t e re st s o f fu t u re ge n -e ra tio n s in to a cco u n t, a lth o u gh th -e r-e is a wid -e d iscu ssio n o n wh a t th ese in terests a re, to wh a t e xte n t we h a ve to ta ke th e m in to a cco u n t, a n d la st ly h ow we ca n b a la n ce t h e m wit h t h o se o f t h e p re se n t ge n e ra t io n . Wh a t is cle a r is t h a t in d e c id in g a c e r t a in c o u r se o f a c t io n (p e r h a p s e ve r yd a y a ct io n ) o r a ce r t a in p u b lic p o licy, we ca n n o lon ger b eh a ve a s if we were th e la st gen -era tion in th e world .
So wh a t kin d of in terests ca n we a ttrib u te to fu t u re ge n e ra t io n s in re la t io n t o wh a t is co m -m o n ly ca lled th e ‘gen etic en d ow-m en t’?
a ) Fir st o f a ll, we c a n re a so n a b ly su p p o se th a t fu tu re gen era tion s a re n ot in terested in in -h eritin g a gen etic en d owm en t (w-h ic-h of cou rse e vo lve s n a t u ra lly a n d is su b je ct t o m u t a t io n s) m a d e wo r se b y o u r a c t io n s o r o m issio n s o f wh a t, th a n ks to th e d evelop m en t of scien ce, we a re a b le t o d o. On t h e b a sis o f t h e p r in cip le o f n o n - m a le fic e n c e, t h is c re a t e s o b liga t io n s fo r u s, b o t h in t e r m s o f e n viro n m e n t a l p o lic ie s (p o llu tio n , ra d ia tio n etc.) a n d h ea lth ca re p o li-cie s, to a vo id , a s fa r a s p o ssib le, th e wo rse n in g o f ge n e t ic e n d owm e n t . Th e wo rd in g ‘a s fa r a s p ossib le’ m ea n s th a t in ca se of con flict we h a ve t o b a la n ce t h e in t e re st s a t st a ke. Fo r e xa m p le, fu t u re ge n e ra t io n s c o u ld h a ve a n in t e re st in o u r n o t c u r in g p e o p le wit h ge n e t ic a lly b a se d d isea ses u sin g tra d itio n a l m ed ica l th era p ies, in o rd er to a vo id th eir rea ch in g rep ro d u ctive a ge. Few o f u s a re p rep a red to sa tisfy th is h yp o th etica l req u est: th e o b liga tio n to cu re rea l in d ivid u a ls ove rrid e s a n y in te re st o f p o ssib le in d ivid u a ls. As Ca lla h a n (1980) o b se r ve d , fu t u re ge n -era tio n s ca n req u ire th a t we refra in fro m a su r-p lu s e xe rcise o f r igh t s, b u t t h is is n o t t h e ca se o f t h e r igh t t o (I wo u ld sa y t h e n e e d fo r ) life -sa vin g h ea lth ca re.
If we le a ve a sid e t h is t yp e o f c a se, I t h in k t h a t we c o u ld sa y t h a t n e ga t ive e u ge n ic s, a im ed a t a vo id in g th e wo rsen in g o f gen etic en -d owm en t, fa lls with in o u r o b liga tio n s to fu tu re ge n e ra t io n s. We a ct u a lly im p le m e n t su ch p ro -gra m s, b u t we p re fe r t o ca ll t h e m a s it so u n d s in t h e t it le o f a WH O re p o r t (1996) Con t rol of Hered itary Diseases. Pro b a b ly in st it u t io n s a n d p ro fe ssio n a ls in vo lve d wo u ld p ro te st th a t th e y d o n o t h a ve a n y in t e n t io n t o d o e u ge n ics, b u t t h e re su lt s a re e u ge n ics. I p re fe r t o ca ll t h in gs by th eir p rop er n a m es.
owm e n t , a n d we ca n su p p o se t h a t fu t u re ge n e ra -t io n s will b e in -t e re s-t e d in -t h is, if i-t is p o ssib le a n d sa fe. Th is id e a wa s virtu a lly a fo o lish a sp i-ra t io n in t h e p a st , wh e n t h e o n ly m e a n s wa s th e con trol of rep rod u ction . At p resen t it is th e-o re t ica lly p e-o ssib le, a n d m a n y t h in k t h a t in t h e fu t u re, if a n d wh e n ge r m - lin e ge n e t h e ra p y is sa fe, it will b e p ra c t ic a lly fe a sib le t o o. Wh a t kin d o f im p rove m e n t s c a n we im a gin e ? Fir st , p ro t e ct ive a n d p re ve n t ive im p rove m e n t s, like th o se liste d b y An d e rso n (1985), to wh ich Ha r-r is (1992) a d d s, fo r-r e xa m p le, t h e p r-ro t e c t io n a ga in st in fectiou s d isea ses like m a la ria , h ep a ti-t is, a n d AID S o r a ga in sti-t ti-t h e a gin g p ro c e ss. Of co u rse a re gu la r e u ge n icist wo u ld a d d t h e im -p rove m e n t o f q u a n t it a t ive t ra it s like in t e lli-ge n ce. Th o u gh t h is is ve r y d ifficu lt , so m e sci-e n t ist s h a vsci-e n o t d sci-e sp a irsci-e d o f su c c sci-e sci-e d in g in id en tifyin g th e ‘gen es fo r in telligen ce’ a n d th en m o d ifyin g th em (Ho lm es, 1997).
As I sa id a t t h e b e gin n in g, in m y o p in io n it is d ifficu lt to fin d a m oral p rin cip le or argu m en t wh ich re n d e rs a b so lu t e ly m o ra lly im p e rm issi-b le t h e m a n ip u la t io n o f t h e h u m a n ge n o m e. Th e we ll- kn own a rgu m e n t o f ‘p la yin g Go d ’ wo rks u n d e r sp e cific th e o lo gica l a ssu m p tio n s, b u t d o e s n o t h o ld u p u n d e r o t h e rs, wh e re in -d ee-d it seem s to allow (if n ot to req u ire) gen etic en gin eerin g. Moreover, m an y of u s are n ot will-in g t o e n d o rse a n y t h e o lo gica l a ssu m p t io n s a t a ll in m ora l d iscou rse.
An oth er argu m en t is th at th e h u m an gen om e is in vio la b le b e c a u se it is sa c re d in a se c u la r vein , in th e sen se th a t it is cen tra l to th e im a ge o f m a n , a n d t h a t m a n kin d h a s a n o n t o lo gic a l re sp o n sib ility to th e p re se r va tio n o f th e im a ge o f m a n ( Jo n a s, 1974); o r, in o th e r wo rd s, in th e se n se th a t ta m p e rin g with th e h u m a n ge n o m e im p lies a lterin g h u m a n n ess a t its core, to m od -ify p re c ise ly wh a t re n d e r s u s h u m a n (Ka ss, 1972). In t h is c o n se c ra t io n o f t h e ge n o m e a s ‘t h e e sse n c e o f h u m a n n e ss’ I fin d t h e sa m e kin d o f ge n e tic re d u ctio n ism th a t is ve r y o fte n righ tly d isa p p rove d in ce rta in m a n n e rs o f p re -sen tin g th e resea rch o n th e h u m a n gen o m e: to fin d t h e ‘Ho ly Gra il’, t o d e c ip h e r ‘t h e Bo o k o f Life’, e t c. In h is p u b lic le c t u re s o n ge n e se q u e n cin g, Wa lt e r Gilb e r t u se d t o d ra w a co m -p a c t d isk fro m h is -p o c ke t a n n o u n c in g t o h is a u d ien ce. “Th is is you .”Th ese rh eto rica l stra te-gies u sed by scien tists in sea rch o f su p p o rt a n d fu n d in g cou ld certain ly h ave h elp ed create wh at h a s b e e n ca lle d t h e ‘DNA m yst iq u e’ (Ne lkin & Lin d e e, 1995), wh e re t h e ge n o m e h a s b e co m e t h e e q u iva le n t o f t h e so u l. Howe ve r, it se e m s risky to m e to d raw from th ese rh etorical stra te-gies th e id ea th a t we a re ou r gen om e, so th a t to m o d ify o u r ge n e tic e n d owm e n t m e a n s to a lte r
wh a t re n d e r s u s h u m a n . It is t r u e t h a t t h e ge n o m e is t h e b io lo gic a l b a sis o f life, b u t o u r life is n o t o u r b io lo gy a n d we ca n n o t th in k o f it a s t h e m e re d e t e r m in ist ic d e c o d in g o f a fixe d p ro gra m . Wh a t re n d e rs u s h u m a n is t h e re su lt o f a n in e xt r ic a b le in t e r t win in g o f n a t u re a n d h isto r y, b io lo gy a n d b io gra p h y.
If th ere a re n o fu rth er a rgu m en ts, we co u ld sa y th a t th e id e a o f im p rovin g o u r ge n e tic h e r-ita ge (a s a n im p orta n t b u t n ot n ecessa ry or su fficie n t co n d it io n fo r a h igh e r h u m a n flo u r ish -in g) t h ro u gh d ire c t -in t e r ve n t io n s o n ge n e s is n ot, in p rin cip le, im p erm issib le. However, sin ce t h is d o e s n o t im p ly t h a t it is m o ra lly re q u ire d , th e im p lem en ta tio n o f eu gen ics (ign o rin g h ere t h e a rgu m e n t o f ‘lo n g- t e r m n e ga t ive e ffe c t s’) will d e p e n d o n we igh in g a d va n t a ge s a n d d is-a d vis-a n tis-a ges. In th e b o o k q u o ted is-a b ove, stis-a rtin g fro m th e gen era l o b liga tio n o f th e sta te to p ro -vid e h e a lt h c a re a n d o n t h e b a sis o f a c a re fu l co m p a ra tive a n a lysis o f a d va n ta ges a n d d isa d -va n ta ges, Ha rris (1992: 195) h o ld s th a t we h a ve “to accep t a h igh p riority for th e d istribu tion of t h e resou rces n ecessa ry t o crea t e a n ew b reed”, e q u ip p e d wit h so m e o f t h e ge n e t ic m o d ific a -tio n s listed a b ove. I a m n o t co n vin ced th a t th is
What does the future have in store for mankind?
A fin a l issu e re m a in s. Wh a t if a n o u t co m e like th a t im a gin e d b y Ha rris co u ld b e o b ta in e d n o t a s t h e re s u lt o f a s t a t e - s u p p o r t e d p r o gr a m , b u t ‘b y d e fa u lt’ (t o u se a n e xp re ssio n b y Pa u l), i.e ., a s t h e c o lle c t ive e ffe c t o f in d ivid u a l, n o t c o o rd in a t e d , a c t io n s ? Th is is o n e o f t h e s c e -n a r io s illu s t r a t e d i-n Pa u l’s a r t ic le , t h e o -n e fe a re d b y p e o p le sp e a kin g o f ‘b a c k d o o r’ e u -ge n ics (Du st e r, 1990). Th e p ro ce ss b e gin s in a q u ite rea ssu rin g wa y, n a m ely u sin g gen e th era -p y (th e so m a tic/ germ -lin e d istin ctio n is irrele-va n t h e re ) fo r st r ic t ly t h e ra p e u t ic p u r p o se s. However, it is n ot a t a ll ea sy to d ra w th e b ou n d a r ie s o f a t h e ra p e u t ic a p p lic a t io n , p a r t ly b e -ca u se m ed i-ca l gen etics itself is a lrea d y m o d ify-in g ou r p ercep tion of wh a t d isea se is, p a rtly b e-ca u se with in th e field o f th era p y n ew p o ssib ili-t ie s a re o p e n in g u p : fo r in sili-t a n c e, ili-t o u se ge n e tra n sfer fo r en h a n cem en t p u rp o ses a s p a rt o f a tre a tm e n t d e sign e d to ta ckle a se ve re p a th o lo gy, a s in m u lt id r u g re sist a n c e p ro t o c o ls ( To r -res, 1997); o r, m o re gen era lly a n d effectively, to e n h a n c e ge n e t ic a lly sp e c ie s- t yp ic a l h u m a n h e a lt h m a in t e n a n c e fu n c t io n s, fo r in st a n c e, t h e im m u n e syst e m ( Wa lt e rs & Pa lm e r, 1997). Ma n y m ed ica l p rofession a ls h old th a t th ese u s-e s wo u ld fa ll wit h in t h s-e p ro p s-e r go a ls o f m s-e d i-cin e, n a m e ly t o cu re p e o p le in t h e m o st e ffe c-tive wa y, p reven tin g th e o ccu rren ce o f d isea ses wh en ever p ossib le. Bu t it is clea r th is will m a ke it m o re a n d m o re d ifficu lt t o e st a b lish a cle a rc u t d ivisio n b e t we e n t h e ra p y a n d e n h a n rc e -m e n t . As Ju e n gst (1977) sa ys, t h is wo u ld o n ly b e p o ssib le b y re t u r n in g t o a ‘ro b u st’ co n ce p t o f d ise a se a s ‘o n t o lo gic a l e n t it y’: h owe ve r, h e c o n c lu d e s, t h is wo u ld n o t b a r t h e p a t h t o t h e in flu e n ce o f ch a n gin g cu lt u ra l a n d so cia l va l-u es o n th e m ed ica l rea so n in g a b o l-u t d isea ses.
Th is is a fu r t h e r c o m p lic a t in g fa c t o r. It is like ly t h a t p h a r m a c e u t ic a l c o m p a n ie s will b e re a d y, a s th e y a lre a d y a re in re la tio n to ge n e tic t e st s, t o in ve st in a fie ld t h a t co u ld h a ve e n o r-m o u s fin a n c ia l re t u r n s, a n d it wo u ld b e ve r y d ifficu lt to co n tro l th e m a rke t th ro u gh co n tro -versia l con cep tu a l d istin ction s. Th ese p rosp ec-t ive d e ve lo p m e n ec-t s a re b r ie fly ca p ec-t u re d b y ec-t h e im age of a gen etic su p erm arket, wh ere p rosp ec-t ive p a re n ec-t s co u ld go ec-t o p u rch a se co m p e ec-t iec-t ive a d va n t a ge s fo r t h e ir c h ild re n wit h re sp e c t t o in te llige n ce, h e igh t, o r o th e r so cia lly d e sira b le ch a ra cteristics. It is th u s im a gin ed th a t eu gen ic e ffe c t s c o u ld d e r ive fro m t h e c h o ic e s o f c o n -su m e r s (o f c o u r se, o n ly r ic h c la sse s o f r ic h co u n t r ie s) in t h e p re se n ce o f (a n d p e rh a p s in -d u ce-d by) a com m ercia l su p p ly of ‘a m eliora tive
gen etic m od ification s’. If th ese ad van tages work a n d b e n e fit s b e c o m e e vid e n t , so m e fe a r t h a t p eo p le co u ld get a ccu sto m ed to th e id ea o f gen e t ic im p rove m e gen t a gen d c o u ld vo lu gen t a r ily a c -cep t a m a cro eu gen ic p ro ject.
As is we ll kn own , th is is th e e m p irica l (p sy-ch o -so cio lo gica l) ve rsio n o f th e slip p e r y slo p e a rgu m e n t. Ge n e ra lly sp e a kin g, I th in k th a t th e slip p e r y slo p e is a r h e t o r ica l a rgu m e n t wh o se p re d ic t ive va lu e (in a lm o s t c a t a s t r o p h ic ve r -sio n s) is fa r fro m p rove n . Ne ve r t h e le ss, le t u s su p p o se th e p la u sib ility o f th a t sce n a rio. Wh a t is t h e p r o b le m ? Th e a r gu m e n t w o r ks if a n d o n ly if it ca n b e d e m o n st ra t e d t h a t t h e fin ish -in g l-in e is m orally ob jection ab le. Bu t for wh o m ? Ce r t a in ly n o t fo r t h e so c ie t y in wh ic h e u ge n ics will b e a cce p t e d b e ca u se it will b e co n sid -e r-e d b -e n -e fic ia l: it is n o r m a l t h a t s o c i-e t i-e s c h a n ge c u s t o m s, m in d s e t s, a n d w a ys o f life a n d t h in kin g. Scie n ce p la ys a n im p o r t a n t ro le in a ll t h is.
I t h in k t h a t o u r ge n e ra t io n h a s n o in t e re st in a d o p t in g a e u ge n ic s p ro gra m : if o n e o f t h e fu t u re ge n e ra t io n s will h a ve su c h a n in t e re st a n d will b e a b le t o a ffo rd t h e c o st s, t h is is a p ro b le m re ga rd in g t h a t ge n e ra t io n . Wa it a n d see, we ca n sa y: we h a ve sim p ly n ot to p la n n or t o h in d e r, n o r t o fa vo r t h e cre a t io n o f t h e co n d itio n s in wh ich su ch a d ecisio n co u ld even tu -a lly b e -a ssu m e d . Th o se wh o h o ld , o n th e b -a sis o f t h is ve r y we a k a rgu m e n t , t h a t we h a ve t h e o b liga t io n t o st o p re se a rc h o n t h e h u m a n ge n o m e (t h is is wh a t is a t st a ke !) a re sim p ly t ra n sfe rr in g t h e ir own p e rso n a l u n e a sin e ss t o t h e fu t u re, c a p t u re d b y e xp re ssio n s like ‘I d o n o t wa n t t o live in a wo r ld in wh ich ge n e s a re give n su ch a n im p o r t a n ce.’ It is a re sp e ct a b le o p in io n , b u t t h e re is n o re a so n t o t h in k t h a t it h o ld s tru e fo r ever yo n e o r fo rever.
Conclusion
Th ere is too m u ch a t sta ke tod a y, a n d it is of p a ra m ou n t im p orta n ce th a t th e d eb a te on p re-se n t a n d p ro sp e c t ive a p p lic a t io n s o f ge n e t ic resea rch get rid of gh osts a n d d evelop a t th e ra -t io n a l le ve l, -t h e o n ly le ve l fi-t fo r a wo r ld in wh ic h o n e c a n n o lo n ge r c o n t e n d t o b e t h e re p o sit o r y o f t h e (so le ) t r u t h . I t h in k t h a t t h e an ti-scien tific catastrop h ism of th ose wh o wan t t o st o p re se a rch m u st b e re fu se d in p r in cip le. To d o t h is, h owe ve r, d o e s n o t m e a n t h a t we h a ve to b ecom e h osta ges to th e tech n oscien
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