Genetics and right: a methodology

References

• The extraordinary development over recent decades in the field of bio-technology is opening up new horizons in science. The sophisticated molecular biology techniques are enabling rapid progress in the field of diagnostic tests and new therapeutic strategies. One of the sectors most important is the study of viruses and the mechanisms that regulate their bonds. On the topic of evolution regarding bio-engineering and molecular genetics, cf., Astolfi P – Salamini F – Sgaramella V, Are we genomic mosaics? Variations of the genome of somatic cells can contribute to diversify our phenotypes, Current Genomics, 2010 (11), 379–386; Barbarini N – Simonelli L – Azzalin A – Comincini S – Bellazzi R, Development of a novel bioinformatics tool for in silico validation of protein interactions, Journal of Biomedicine and Biotechnology, 2010, 67-125; Balestrazzi A – Locato V – Bottone MG – De Gara L – Biggioggiera M – Pellicciari C – Botti S – Di Gesù D – Donà M – Carbonera D, Response to UV-C radiation in topo I-deficient carrot cells with low ascorbate levels, Journal of experimental Botany, 2010 (61), 575–585; Buiatti M, Le biotecnologie, Il Mulino, Bologna, 2004; Giovannetti T, Biotecnologie e sicurezza alimentare: la tutela della salute del consumatore tra Corte costituzionale e Corte di giustizia della Comunità europea, D’Aloia A (edited by), Bio-tecnologie e valori costituzionali. Il contributo della giustizia costituzionale, Giappichelli, Torino, 2005, 325 ff.; Milazzo P, Alcune questioni di interesse costituzionale in materia di organismi geneticamente modificati in agricoltura, Diritto Pubblico, 2005 (1), 225 ff
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• The spread of predictive genetic tests could determine a real social regeneration. The Conseil d’Etat de Paris, by the end of the nineties of the last century, expressed this by saying: “déjà, des discriminations licites sont pratiquées et sont fondées sur l’état de santé. Les renseignements médicaux (antécédents familiaux, hypercholestérolémie, hypertension artérielle) que les assureurs sont en droit de solliciter renvoient indirectement à des caractéristique génétiques. Il est donc loin d’être évident que les tests génétique représentent une étape radicalement nouvelle, comme il est couramment affirmé”. The American Council of Life Insurance and the Health Insurance Association of America claim: “We view the use of genetic information and tests like other medical information so as to keep life insurance affordable” (for The Health Insurance Association of America, cf., Testimony of the Health Insurance Association of America on Genetic Testing border the Senate Committee on Labour and Human Resources, Acta of 105° Cong., 2d Sess., 21.5.1998, Boston University Press, 221 ff.)
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• To deepen this discussion please see: Menesini V, Introduzione allo studio giuridico della nuova genetica, Giuffrè, Milano, 2003. In this author’s opinion there would be no limitation in recognizing the principle of unrestricted applicability of their genetic information because “[…] ciascuno deve poter scegliere liberamente […] come vuole apparire […] oppure come evitare preventivamente le patologie, proprie e familiari. Affermare che per questa strada si soddisfano bisogni futili, come la predeterminazione del colore dei capelli o degli occhi, o che si compiono scelte irreversibili in quanto vanno ad incidere sul genotipo, costituisce un'obbiezione contraddittoria, poiché solo la persona può decidere quale sia il bisogno che intende soddisfare, né l'incidenza sul genotipo è concettualmente diversa se si affrontano preventivamente malattie o bisogni che altri ritenga futili” (cit., 10)
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• Casonato C, La discriminazione genetica: una nuova frontiera nei diritti dell’uomo?, Relazione al XV Colloquio Biennale AIDC, Messina – Taormina, 31 maggio – 2 giugno 2001, 1–13; Chieffi L, Ingegneria genetica e valori personalistici, Id., Bioetica e diritti dell’uomo, Torino, 2000, 83 ff.; Rodotà S, Bioetica e tutela della persona, Relazione al Convegno Linceo del 4–5 dicembre 1998, Acta of the Accademia Nazionale dei Lincei, II, 1998; Calò E, Il ritorno della volontà. Bioetica, nuovi diritti ed autonomia privata, Giuffrè, Milano, 1999; Quaquarelli A, La Convenzione sulla biomedicina del Consiglio d’Europa, RDPSP, 1997, 267 ff.; Cataldi G, La convenzione del Consiglio d’Europa sui diritti dell’uomo e la biomedicina, Chieffi L (edited by), Bioetica e diritti dell’uomo, cit., 272 ff
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• To deepen this discussion please see: Lee Jones N, RL30006: Genetic Information: Legal Issues Relating to Discrimination and Privacy, Harvard University Press, 2012 (2), 423 ff.; Burley J – Dawkins R, The Genetic Revolution and Human Rights, Oxford University Press, 1999; Brownsword R - Cornish WR- Llewelyn M, Introduction of Law and Human Genetics: Regulating a Revolution, CPES, 2010
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• The reference is to articles 2, 3, 13 and 32 of the Constitution. These articles put the person into the heart of the legal system. The articles 9, 33 and 41 of the Constitution safeguard scientific research and the private sector
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• Baldassarre A, Le biotecnologie e il diritto costituzionale, Volpi M (edited by), Le biotecnologie: certezze e interrogativi, Il Mulino, Bologna, 2001, 15 ff.; Ferrari GF, Biotecnologie e diritto costituzionale, DPCE, 2002 (4), 1565 ff
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• Rodotà S, La vita e le regole, Tra diritto e non diritto, Feltrinelli, Milano, 2006, 185 ff. For civil law, the “Biological group” is legally relevant
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• For example in private sector work, where the genetic data could be used to not employ workers that in the future could become sick
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• As long ago as 1998, the Icelandic Parliament passed the Act on a Health Sector Database which creates a system of health databases containing genetic data of citizens. In Iceland, the following association was created: the Mannvernd (Association of Icelanders for Ethics in Science and Medicine). For the Human Genome Diversity Project cf., The Resolution on the Human Genome Diversity Project (1993-12-10) of World Council of Indigenous People; Yesley MS, Protecting Genetic Difference, Berkeley Technology Law Journal, 1998, 653 ff
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• Recently, the “Working group art. 29” (WPArt.29) - the advisor of the European Commission in the field of data protection, which includes representatives of the National Authority for Supervision of all EU Member States - has issued an opinion (Opinion n. 2014/05 wp216) concerning the regulation of so-called anonymisation techniques (for anonymity) in the light of existing Community law on the protection of personal data. The WPArt29 recognizes the importance of such techniques as an operational solution to avoid the risks for the various stakeholders
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• According to data reported in June 2011 by the Council for Responsible Genetics, forty-two states have statutes that provide varying levels of protection against genetic discrimination in the field of health insurance (Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Florida, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, North Carolina, Ohio, Oklahoma, Oregon, Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Vermont, Virginia, Wisconsin, Wyoming); eight States have adopted legislation to protect genetic discrimination in the area of disability insurance (Arizona, California, Colorado, Maine, Massachusetts, Montana, New Jersey, Wisconsin); seven States have anti-discrimination legislation in the life insurance (Arizona, California, Maine, Maryland, Massachusetts, Montana, New Jersey); Twenty-one states have similar legislation concerning working trusts (Arizona, California, Connecticut, Delaware, Iowa, Kansas, Maine, Massachusetts, Michigan, Missouri, New Hampshire, New Jersey, New York, Nevada, North Carolina, Oklahoma, Oregon, Rhode Island, Texas, Vermont, Wisconsin); twenty-three States shall protect the privacy of genetic data (Arizona, California, Colorado, Delaware, Florida, Georgia, Illinois, Indiana, Louisiana, Massachusetts, Missouri, Nevada, New Hampshire, New Jersey, New Mexico, New York, Oklahoma, Oregon, South Carolina, South Dakota, Texas, Vermont, Virginia); three States have no legislation on discrimination or genetic privacy (Mississippi, Utah, Washington)
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• The expression “right not to know”, was established by article 10, second paragraph, of the Oviedo Convention in accordance with which “everyone has the right to know all information collected on their health. However it the will of the person not to be informed must be respected”
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• The particularly sensitive data, genetic data are subject to compliance with certain basic principles: (a) the principle of relevance and not abuse; (b) the principle of proportionality; (c) the principle of finality; (d) the right of interested parties to be informed and to access data concerning them
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• Cf., Draft Common Frame of Reference, in the Principles Definitions and Model Rules of European private Law – “right to damages” – “‘Loss’ includes economic and non-economic loss. “Economic loss” includes loss of income or profit, burdens incurred and a reduction in the value of property. “Non-economic loss” includes pain and suffering and impairment of the quality of life”. To deepen this discussion please see: Cendon P, Danni da inadempimento, responsabilità del professionista, lavoro subordinato, Cedam, Padova, 2011, 21
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• An incorrect, incomplete, inaccurate or unauthorized disclosure of genetic data that could damage the legal position of third parties
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• To deepen this discussion please see: Schmidt D, Achermann J, Odermatt B, Genoni M, et al., (2008), Cryopreserved amniotic fluid-derived cells: a lifelong autologous fetal stem cell source for heart valve tissue engineering, J Heart Valve Dis. 17(4), 446–455; Keirstead HS, Nistor G, Bernal G, et al. (May 2005), Human embryonic stem cell-derived oligodendrocyte progenitor cell transplants remyelinate and restore locomotion after spinal cord injury, J. Neurosci, 25 (19): 4694–705, doi:10.1523/JNEUROSCI.0311-05.2005; Vergano D, (11 October 2010), Embryonic stem cells used on patient for first time, USA Today, Retrieved, 12 October 2010
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• To deepen this discussion please see: Vesto A, I beni. Dall’appartenenza egoistica alla fruizione solidale, Giappichelli, Torino, 2014; Id., publishing in this journal, The human genome as “common good”
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• The verse is taken from the famous work by Giacomo Leopardi, La ginestra (Il fiore del deserto). This is the penultimate composition of the poet, written in the Spring of 1836 and published posthumously in the edition of I Canti (1845). The vast poem is considered his spiritual testament
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