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Capitolo XII: Il mito della perfezione

5. Conclusioni

Il lavoro di questa ricerca è stato dedicato alla delicata questione della genetica applicata all’uomo. Un problema le cui potenzialità potrebbero rivelarsi molto più

172 grandi di quanto noi oggi possiamo immaginare, ma anche essere molto meno significative del previsto. Oltretutto, il rapporto tra genetica e uomo è solo una porzione del più ampio spettro di questioni inerenti l’uso dell’ingegneria genetica, che avrà notevoli ripercussioni nei campi della farmacologia, della sperimentazione animale e dell’industria agro-alimentare. L’impatto della genetica sul mondo non-umano potrebbe essere molto più importante di qualunque intervento di terapia genica realizzabile su un paziente umano.

Nel corso del lavoro si è tentato di far emergere le questioni dilemmatiche relative all’impiego di tecniche di ingegneria genetica e mostrare che essa non propone

soluzioni universali che possano essere valide in ogni situazione. Le radici di questo problema sono profondamente innestate sui temi fondamentali della discussione filosofica attuale, come la natura dell’uomo e il suo rapporto con l’elemento tecnologico-artificiale, la questione dell’ambiente e del ruolo dell’uomo all’interno di esso, il problema dei diritti, tra cui quello alla vita e, a volte, anche alla morte.

Altrettanto chiaramente, la storia ci insegna che non ci è permesso escludere del tutto l’eventualità di applicazioni devianti e potenzialmente disastrose di queste tecnologie, le cui ripercussioni potrebbero manifestarsi non solo su singoli individui, ma su significative porzioni umanità.

Di fronte a questo inarrestabile progresso tecnico-scientifico, e in particolare di fronte a questa nuova rivoluzione genetica, la filosofia e la bioetica non hanno il potere di imporre, da sole, soluzioni di carattere normativo. Risulta evidente, quindi, la necessità di ridefinire la natura del rapporto tra la scienza sperimentale e la bioetica. La bioetica non ha l’obbligo di censurare a priori la sperimentazione in campo genetico, ma ha il

173 dovere di prevedere e, successivamente, di valutare la qualità degli esiti di questa sperimentazione, indagando le problematiche che potrebbero emergere dall’applicazione delle nuove tecnologie. Essa ha quindi il dovere di alimentare costantemente il dibattito, tenendo vivo il ricordo degli errori del passato, affinché, l’umanità possa liberamente decidere del proprio futuro.

174

BIBLIOGRAFIA

N. AGAR, Liberal Eugenics, in H. KUHSE e P. SINGER (ed.), Bioethics - An Anthology, Blackwell Publishing, Oxford,1999

G. ANNAS, L. ANDREWS, R. ISASI, Protecting the endangered human: toward an international treaty prohibiting cloning and inheritable alterations in «American Journal of Law and Medicine», 28 (2002)

J.D. ARRAS, Reproductive Technology in R.G. FREY e C.H. WELLMAN (ed.), A Companion to Applied Ethics, Blackwell Publishing, Oxford, 2003

M. BALISTRERI, Etica e Clonazione Umana, Guerini Studio, Milano, 2004

R. BENJAMIN, Interrogating Equity: A Disability Justice Approach to Genetic Engineering, in «Issues of Science and Technology», 32 (2016)

P. BERG, D. BALTIMORE, H.W. BOYER, S.N. COHEN, R.W. DAVIS, D.S. HOGNESS, D. NATHANS, R. ROBLIN, J.D. WATSON, S. WEISSMAN, N.D. ZINDER, Potential Biohazards of Recombinant DNA Molecules, in «Science» 185 (1974)

A.L. BREDENOORD, W. DONDORP, G. PENNINGS, G. DE WERT, Avoiding transgenerational risks of mitochondrial DNA disorders: a morally acceptable reason for sex selection?, in «Human Reproduction» 25 (2010)

D.W. BROCK, Genetic Engineering, in R.G. FREY e C.H. WELLMAN (ed.), A Companion to Applied Ethics, Blackwell Publishing, Oxford, 2003

M.C. BROWN, Males with an XYY sex chromosome complement, in «Journal of Medical Genetics» 5 (1968)

D. BUBECK, Sex Selection: The Feminist Response, in J. BURLEY e J. HARRIS (ed.), A Companion to Genethics, Blackwell Publishers, Oxford, 2002

A. BUCHANAN, D.W. BROCK, N. DANIELS, D. WIKLER, From Chance to Choice. Genetics & Justice, Cambridge University Press, New York, 2000

C.A.J. COADY, Playing God, in J. SAVULESCU e N. BOSTROM (ed.), Human Enhancement, Oxford University Press, Oxford, 2009

S. CREIGHTON, Surgery for intersex, in «Journal of the Royal Society of Medicine» 94 (2001)

175 N. DANIELS, Can anyone really be talking about ethically modifying human nature?, in J. SAVULESCU e N. BOSTROM (ed.), Human Enhancement, Oxford University Press, Oxford, 2009

A. DAVIS, Right to Life of Handicapped, in H. KUHSE e P. SINGER (ed.), Bioethics - An Anthology, Blackwell Publishing, Oxford, 1999

D.S. DAVIS, Genetic Dilemmas and the Child’s Right to an Open Future, «28 Rutgers Law Journal» 549 (1997)

R. DAWKINS, From the Afterword in «The Herald Scotland» (2006)

G.DE WERT, W. DONDROP. Preconception sex selection for non-medical and intermediate reasons: ethical reflections, in «Facts, Views & Vision» 2 (2010)

D. DICKENSON, Carriers of genetic disorder and the right to have children, in «Geneticae Medicae et Gemellologiae» 44 (1995)

R. DWORKIN, Playing God, in «Prospect Magazine» XLI (1999)

N. EASTMAN, C. CAMPBELL, Behavioural genetics and antisocial behaviour, in «Nature Reviews Neuroscience» 7 (2006)

E. ENGEL, The making of an XYY, in «American journal of mental deficiency» 77 (1972)

A. FLETCHER, Making it Better? Disability and Genetic Choice, in E. LEE (ed.) Debating Matters. Designer Babies: Where Should We Draw the Line?, Hoddler and Stoughton, Londra, 2002

G. FORNERO, Bioetica cattolica e bioetica laica, Bruno Mondadori, Milano, 2009

T. FRIEDMANN, R. ROBLIN, Gene therapy for human genetic disease?, in «Science» 175 (1972)

F. FUKUYAMA, Our Posthuman Future: Consequences of the Biotechnology Revolution, Picador, Londra, 2003

J. GLOVER, What sort of people should there be? Genetic Engineering, Brain Control and their Impact on our Future World, Penguin Books, New York, 1984

176 J. GOODFIELD, Giocare alla divinità. Ingegneria genetica e manipolazione della vita, Feltrinelli, 1981

R.M. GREEN, Babies by Design. The Ethics of Genetic Choice, Yale University Press, New Haven and London, 2007

M. GYMREK, A.L. MCGUIRE, D. GOLAN, E. HALPERIN, Y. ERLICH, Identifying Personal Genomes by Surname Inference, in «Science» 339 (2013)

C. GYNGELL, T. DOUGLAS, Stocking the Genetic Supermarket: Reproductive Genetic Technologies and Collective Action Problems, in «Bioethics» 29 (2014)

J. HABERMAS, Il futuro della natura umana. I rischi di una genetica liberale, Einaudi, Torino, 2010

D.J. HARAWAY, Manifesto cyborg. Donne, tecnologie e biopolitiche del corpo, Feltrinelli, Milano, 1995

J. HARRIS, Cloning, in R.G. FREY e C.H. WELLMAN (ed.), A Companion to Applied Ethics, Blackwell Publishing, Oxford 2003

J. HARRIS, Enhancing Evolution. The Ethical Case for Making Better People, Princeton University Press, Princeton and Oxford, 2007

J. HARRIS, “Goodbye Dolly?” The Ethics of Human Cloning, in H. KUHSE e P. SINGER (ed.), Bioethics - An Anthology, Blackwell Publishing, Oxford, 1999

J. HARRIS, Is gene therapy a form of Eugenics?, in H. KUHSE e P. SINGER (ed.), Bioethics - An Anthology, Blackwell Publishing, Oxford, 1999

J. HARRIS, Wonderwoman e Superman. Manipolazione genetica e futuro dell’uomo, Baldini&Castoldi, Milano, 1997

J. HUGHES, Embracing Change with All Four Arms: A Post-Humanist Defense of Genetic Engineering, in «Eubios Journal of Asian and International Bioethics» 6 (1996)

A. HUXLEY, Il mondo nuovo - Ritorno al mondo nuovo, Oscar Mondadori, Milano, 2010

177 H. JONAS, Il Principio Responsabilità. Un’etica per la civiltà tecnologica, Einaudi, Torino, 2009

H. JONAS, Tecnica, medicina ed etica. Prassi del principio responsabilità, Einaudi, Torino, 1997

A.R. JONSEN, The birth of bioethics, Oxford University Press, Oxford, 2003

E.T. JUENGST, What’s taxonomy got to do with it? ‘Species Integrity’, Human Rights, and Science Policy, in J. SAVULESCU e N. BOSTROM (ed.), Human Enhancement, Oxford University Press, Oxford, 2009

L.R. KASS, The wisdom of repugnance: why we should ban the cloning of human beings, in «The New Republic» XVII (1997)

D.J. KEVLES, In the Name of Eugenics. Genetics and the Uses of Human Heredity, University of California Press, Berkeley and Los Angeles, 1985

A. KHAN, Clone mammals...clone man, in «Nature» 386 (1997)

P. KITCHER, Creating Perfect People, in J. BURLEY e J. HARRIS (ed.), A Companion to Genethics, Blackwell Publishers, Oxford, 2002

E. LANPHIER, F. URNOV, S.E. HAECKER, M. WERNER, J. SMOLENSKI, Don't edit the human germ line, in «Nature» 519 (2015)

M. LAPPÈ, Ethical Issues in Manipulating the Human Germ Line, in H. KUHSE e P. SINGER (ed.), Bioethics - An Anthology, Blackwell Publishing, Oxford, 1999

A.N.C. LIU, Wrongful life: some of the problems, in «Journal of medical ethics» 13 (1987)

R. MACKLIN, Cloning and Public Policy, in J. BURLEY e J. HARRIS (ed.), A Companion to Genethics, Blackwell Publishers, Oxford, 2002

C. MARIETTA, A.M. MCGUIRE, Direct-to-Consumer Genetic Testing: Is It The Practice of Medicine?, in «The Journal of Law, Medicine & Ethics » 37 (2009)

R. MCDERMOTT, D. TINGLEY, J. COWDEN, G. FRAZZETTO, D.D.P. JOHNSON, Monoamine oxidase A gene (MAOA) predicts behavioral aggression following

178 M.J. MEHLMAN, Wondergenes: Genetic Enhancement and the Future of Society, Indiana University Press, Bloomington, 2003

A. MIDDLETON, J. HEWISON, R.F. MUELLER, Attitudes of Dead Adults toward Genetic Testing for Hereditary Deafness, in «American Journal of Human Genetics» 63 (1998)

A. MIDDLETON, S. EMERY, C. PALMER, P. BOUDREAULT, Deaf Community and Genetics, in «eLS» (2013)

P.S. MILLER, R.L. LEVINE, Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities, in «Genetics in Medicine» 15 (2013)

J. MILLUM, The foundation of the child’s right to an open future, in «Journal of social philosophy» 45 (2014)

R. NOZICK, Anarchy, State and Utopia, Basic Books, New York, 2013

T. PETERS, For the Love of Children: Genetic Technology and the Future of the Family, Westminster-John Knox Press, Louisville, 1996

J. RAWLS, Una teoria della giustizia, Feltrinelli, Milano, 1997

S.M. REINDAL, Disability, gene therapy and eugenics, in «Journal of Medical Ethics» 26 (2000)

R. RHODES, Genetic links, family ties and social bonds: rights and responsibilities in the face of genetic knowledge, in «The Journal of Medicine and Philosophy» 3 (1998)

M. SANDEL, The Case Against Perfection: What’s Wrong with Designer Children, Bionic Athletes, and Genetic Engineering, in J. SAVULESCU e N. BOSTROM (ed.), Human Enhancement, Oxford University Press, Oxford, 2009

M.J. SANDEL, The Case against Perfection. Ethics in the Age of Genetic Engineering, Belknap Press, Cambridge, 2009

T. SHAKESPEARE, Disability, genetics, and global justice, in «Social Policy & Society» 4 (2005)

T. SHAKESPEARE, Prenatal Diagnosis, Disability Equality and Freedom of Choice, in «Australian Law Reform Commission - Reform Journal» 79 (2001)

179 L.M. SILVER, Remaking Eden. How genetic engineering and cloning will transform the american family, HarperCollins Publishers, New York, 2007

P. SINGER, Parental Choice and Human Improvement, in J. SAVULESCU e N. BOSTROM (ed.), Human Enhancement, Oxford University Press, Oxford, 2009

P. SINGER, Shopping at the Genetic Supermarket in S.Y. SONG, Y.M. KOO, D.R.J. MACER (ed.), Asian Bioethics in the 21st Century, Eubios Ethics Institute,

Christchurch, 2002

J. RIFKIN, The Biotech Century: Harnessing the Gene and Remaking the World, TarcherPerigee, New York, 1999

J.A. ROBERTSON, Children of Choice: Freedom and the New Reproductive Technologies, Princeton University Press, Princeton, 1994

A. SOMMERVILLE, V. ENGLISH, Genetic privacy: orthodoxy or oxymoron?, in «Journal of Medical Ethics» 25 (1999)

B. STEINBOCK, Designer babies: choosing our children's genes, in «The Lancet» 372 (2008)

D. SUZUKI, P. KNUDTSON, Genethics. The Clash Between the New Genetics and Human Values, Harvard University Press, Cambridge, 1990

G. TAMINO, Riduzionismo biologico e determinismo genetico, in «Micron» 5 (2006)

G.R. TAYLOR, La bomba biologica, Mondadori, Milano, 1968

S. VELLA, Genetic Engineering Is Disabling, in «Canadian Blind Monitor» 16 (2003)

M.A. WARREN, Sex Selection: Individual Choice and Cultural Coercion in H. KUHSE e P. SINGER (ed.), Bioethics - An Anthology, Blackwell Publishing, Oxford 1999

J.D. WATSON, F.H.C. CRICK, Molecular Structure of Nucleic Acids. A Structure for Deoxyribose Nucleic Acid in «Nature» 171 (1953)

I. WILMUT, Cloning in Biology and Medicine: Clinical Opportunities and Ethical Concerns in J. BURLEY e J. HARRIS (ed.), A Companion to Genethics, Blackwell Publishers, Oxford, 2002

180

FILMOGRAFIA

Codice 46 (Code 46, Michael Winterbottom, 2003)

Gattaca - La porta dell'universo (Gattaca, Adrew Niccol, 1997) Il giglio nero (The Bad Seed, Mervyn LeRoy, 1956)

Non lasciarmi (Never Let Me Go, Mark Romanek, 2010) The Island (Michael Bay, 2005)

Prometheus (Ridley Scott, 2012)

SITOGRAFIA http://www.ansa.it/canale_scienza_tecnica/notizie/biotech/2017/03/14/topi-salvati-dalla- cecita-con-il-taglia-incolla-del-dna-_3c356e54-cf03-4d4f-b055-12a47e8ea997.html http://www.bionews.org.uk/page_656359.asp http://www.bionews.org.uk/page_787537.asp http://www.cbsnews.com/news/the-cochlear-implant-controversy/ http://disability-studies.leeds.ac.uk/files/library/UPIAS-fundamental-principles.pdf https://www.genome.gov/27561246/privacy-in-genomics/ http://www.heraldscotland.com/news/12760676.From_the_Afterword/ http://www.huffingtonpost.it/2017/02/20/figlia-donare-organi_n_148792 http://www.ibtimes.com/obamas-precision-medicine-database-how-safe-private-patient- data-1802570 https://www.lifesitenews.com/news/indias-gender-imbalance-worst-in-recorded-history https://www.nap.edu/read/21913/chapter/1 http://www.nature.com/news/2009/091030/full/news.2009.1050.html http://www.nature.com/news/chinese-scientists-to-pioneer-first-human-crispr-trial- 1.20302?WT.mc_id=TWT_NatureNews http://www.nature.com/news/first-crispr-clinical-trial-gets-green-light-from-us-panel- 1.20137 http://news.bbc.co.uk/onthisday/hi/dates/stories/july/25/newsid_2499000/2499411.stm http://news.nationalgeographic.com/2017/04/artificial-womb-lambs-premature-babies- health-science/ https://www.newscientist.com/article/dn1002-divorce-is-written-in-the-dna/ http://www.npr.org/templates/story/story.php?storyId=4700156 http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html https://www.pazienti.it/malattie/sindrome-xyy http://www.raggededgemagazine.com/mar98/onedge03.htm http://www.rainews.it/dl/rainews/articoli/Chirurgia-prenatale-e-possibile-intervenire- chirurgicamente-su-un-feto-c9b4ed1e-09d0-4de2-ab39-c61ea5a0f2e0.html http://www.repubblica.it/salute/medicina/2013/05/14/news/angelina_jolie_- 58773357/?ref=HREC1-1 http://www.sciencealert.com/a-swedish-scientist-is-using-crispr-to-genetically-modify- healthy-human-embryos

181 http://www.telegraph.co.uk/news/science/science-news/9480372/Genetically- engineering-ethical-babies-is-a-moral-obligation-says-Oxford-professor.html https://www.theguardian.com/books/2011/aug/07/boys-from-brazil-levin-review https://www.theguardian.com/world/2014/aug/04/global-surrogacy-laws-debate-baby- gammy-thailand http://www.unfpa.org/gender-biased-sex-selection#sthash.2hmI7Kq4.dpuf http://www.uvm.edu/~eugenics/primarydocs/oraesec000026.xml http://www.voicesinbioethics.net/newswire/2016/03/21/ectogenesis http://www.who.int/genomics/gender/en/index4.html https://www.wired.com/2015/10/familial-dna-evidence-turns-innocent-people-into- crime-suspects/ http://www.yourgenome.org/facts/what-is-crispr-cas9 https://blog.23andme.com/news/an-update-regarding-the-fdas-letter-to-23andme/

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