Università degli Studi di Milano Facoltà di Giurisprudenza Anno Accademico 2011-12
Corso Nuove dimensioni della libertà individuale
Lezione del 19 marzo 2012 (Diritto e genetica)
La stampa e l'utilizzo di lucidi e di materiali messi a disposizione sono consentiti esclusivamente per le finalità del corso.
Ogni altro utilizzo deve essere preventivamente autorizzato.
Prof. Amedeo Santosuosso
[email protected]
La sovranità dell individuo
Legami biologici Genetic (natural ?) ties Biobanking/PMA/StemCells
Neuro, ICT and Artificial (?) Connections Quale diritto per tutto ciò? Come cambiano i sistemi giuridici e le fonti
I “Savi” di Fausto Melotti 3
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L’ordine giuridico patriarcale
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New Jersey
v.
Japan
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What about these cases/situations ?
I decide how/when my life ends!
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What about these cases/situations ?
Each individual is able to decide how/ when her/his own life ends!
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What about these cases/situations ?
Each individual is able to decide how/ when her/his own life ends!
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La prospettiva I confini biologici dell individuo sono frammentati a livello individuale
Il controllo è rimesso alle libere scelte dell individuo, mentre la società e il diritto stabiliscono le sole regole di compatibilità
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On Liberty
by John Stuart Mill
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On Liberty
by John Stuart Mill
“… there is a sphere of action in which society, as distinguished from the individual, has, if any, only an indirect interest;
comprehending all that portion of a person's life and conduct which affects only himself, or, if it also affects others, only with their free, voluntary, and undeceived consent and participation.”
“… the appropriate region of human liberty…”
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On Liberty
by John Stuart Mill
“It comprises, first, the inward domain of consciousness” “Secondly, the principle requires liberty of tastes and pursuits; of framing the plan of our life to suit our own character; of doing as we like, subject to such consequences as may follow; without impediment from our fellow-creatures, so long as what we do does not harm them even though they should think our conduct foolish, perverse, or wrong. Thirdly, follows the liberty of combination among individuals; freedom to unite, for any purpose not involving harm to others: the persons combining being supposed to be of full age, and not forced or deceived.” 15
On Liberty
by John Stuart Mill
Two basic assumptions
a) Society v. individuals
b) Individual v. each other individual 16
A conceptual clash: XIX Century
Galton 1869 Hereditary Genius
1859 John Stuart Mill On Liberty 17
A conceptual clash
Francis Galton 1869 Hereditary Genius
à eugenics
1859 John Stuart Mill individualization ß
On Liberty
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A conceptual clash
“Nature teems with latent life, which man has large powers of evoking under the forms and to the extent which he desires. We must not permit ourselves to consider each human or other personality as something supernaturally added to the stock of nature, but rather as a segregation of what already existed, under a new shape, and as a regular consequence of previous conditions.
A conceptual clash
Neither must we be misled by the word ‘individuality’, because […] our personalities are not so independent as our self-consciousness leads us to believe. We may look upon each individual as something not wholly detached from its parent source. There is decidedly a solidarity as well as a separateness in all human, and probably in all lives whatsoever […]
A conceptual clash
All life is single in its essence, but various, ever varying, and inter-active in its manifestations, and men and all other living animals are active workers and sharers in a vastly more extended system of cosmic action.”
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The Massachusetts Institute of Technology (MIT), The third revolution: the convergence of the life sciences, physical sciences and engineering, 4 January 2011, http://web.mit.edu/dc/Policy/MIT%20White%20Paper%20on%20Convergence.pdf
!
APPLICAZIONI DELLA GENETICA RISVOLTI GIURIDICI a) b) c) d) e) f) g) h) i) j) k) l)
Terapie geniche Counseling genetico, diagnosi preimpianto e diagnosi prenatale Test genetici: predittivi e presintomatici Dati genetici condivisi Dati genetici e assicurazioni Dati genetici e datori di lavoro Studi di popolazione Clonazione umana Cellule staminali di origine embrionale Biotecnologie e proprietà intellettuale Utilizzi nel processo civile (accertamento paternità…) Utilizzi nel processo penale (identificazione, capacità…) 26
APPLICAZIONI DELLA GENETICA RISVOLTI GIURIDICI a) terapie geniche
Tecnica
Obiettivo ideale: rimpiazzare un gene malato con una sua copia sana (ricombinazione omologa), una vera sostituzione; Modalità attuale: aggiunta del gene sano a quello malato, nella speranza che la sua azione possa annullare l effetto della mutazione. Primo esperimento al mondo 1990, Clinical Center del National Institute di Bethesda (US) su una bambina di 4 anni affetta da deficit dell enzima ADA (prognosi infausta a breve) Primo esperimento in Europa 1991, Istituto San Raffaele di Milano (I) Tutti gli interventi sono preceduti da un parere di un comitato etico. 27 Comitato Nazionale Bioetica 15.2.91
APPLICAZIONI DELLA GENETICA RISVOLTI GIURIDICI a) terapie geniche
Norme Consiglio d Europa, Raccomandazione sull ingegneria genetica n. 934 (1982) 1. Il diritto alla vita e alla dignità dell uomo implicano il diritto di ereditare caratteri genetici che non abbiano subito alcuna manipolazione 2. Unico intervento che può essere giustificato sull uomo è quello di tipo terapeutico 3. Sarà opportuno tracciare le grandi linee di una regolamentazione volta a proteggere gli individui contro le applicazioni di tali tecniche a fini non terapeutici. Consiglio d Europa, Racc. n. 1046(1986) e n. 1100 (1989) • • • •
Bisogna evitare che qualcuno determini le caratteristiche genetiche di qualcun altro, senza la sua volontà e per motivi non degni di tutela; Non è precluso l intervento sul patrimonio genetico sull embrione, in vitro o in utero, o sul feto o su già nati; Ci deve essere una necessità terapeutica 28 Deve essere compilata una lista di patologie.
APPLICAZIONI DELLA GENETICA RISVOLTI GIURIDICI a) terapie geniche
Diritto ad un patrimonio genetico non manipolato? caratteri non patologici caratteri patologici (terapia genica somatica)
Diritto all
integrità genetica:
diritto ad ottenere l assistenza necessaria a raggiungere un identità genetica liberata dalle minorazioni che ne hanno colpito la struttura (documento CNB del 15 febbraio 1991).
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APPLICAZIONI DELLA GENETICA RISVOLTI GIURIDICI a) terapie geniche
Categorie giuridiche ed etiche di riferimento •
Diritto alla salute (art. 32 Cost.)
•
Libertà personale (art. 13 Cost.)
•
Identità personale (art. 2 Cost.)
•
Art. 3 Carta di Nizza (integrità della persona)
•
Trattamenti sanitari sperimentali (norme di buona pratica clinica: Good Clinical Practice; Dichiarazione di Helsinki; Convenzione di Oviedo)
•
Principio di consequenzialità (J. S. Mill): non lesione di terzi, specie per interventi su linea germinale 30
APPLICAZIONI DELLA GENETICA RISVOLTI GIURIDICI a) terapie geniche
Il caso Jesse Gelsinger 1999 (US): Jesse Gelsinger muore a 18 anni a seguito di un tentativo di terapia genica (Università della Pennsylvania) Malattia: una forma di grave epatopatia Terapie disponibili: controllo con farmaci e con una dieta a basso contenuto proteico (terapia seguita). Parere del Comitato etico: intervento difficile da giustificare in pazienti che sono relativamente in salute . Consenso alla sperimentazione: SI, ha voluto partecipare ed era maggiorenne.
QUESITI
Può un adulto decidere di correre il rischio di morire solo per migliorare la propria qualità della vita? Abbiamo bisogno di categorie giuridiche eccezionali? 31
APPLICAZIONI DELLA GENETICA RISVOLTI GIURIDICI a) terapie geniche
Terapia genica germinale Comporta il trasferimento delle modificazioni ai discendenti § §
è promettente dal punto di vista scientifico scarse conoscenze scientifiche acquisite
Norme contrasta con il diritto alla identità genetica: Cons. d Europa, Raccom. 1100 (1989) ? art. 13, Convenzione Oviedo (1997): • Vieta modificazioni del genoma della discendenza; • Giustifica gli interventi di tipo somatico solo per finalità preventive, diagnostiche o terapeutiche; • Nulla dice sulla necessità che la malattia sia grave.
Rischi Nuova definizione di normalità Discriminazioni su base genetica: la malattia, l inabilità e la morte prematura come 32 deviazioni dal funzionamento tipico della specie (eco dell eugenica)
I test genetici CLASSIFICAZIONE • Test diagnostici n Test per la identificazione dei portatori sani n Test preclinici o presintomatici n Test predittivi o di suscettibilità n Test per lo studio della variabilità individuale n Test farmacogenetici n Test a scopo di ricerca 33
Test genetici (C.N. per la Biosicurezza e le Biotecnologie) (1998)
Si intendono le analisi a scopo clinico di DNA, RNA, cromosomi, proteine, metaboliti o altri prodotti genici per evidenziare genotipi, mutazioni, fenotipi o cariotipi correlati o meno con patologie umane ereditabili o insorte su cellule somatiche. Rispetto ad altri esami di laboratorio i risultati di queste analisi, oltre che diagnostici e prognostici, possono risultare predittivi e rendere evidente una suscettibilità e una probabilità di sviluppare una malattia. Coinvolgono inoltre non solo il paziente ma anche la sua famiglia e la sua discendenza. 34
Le malattie genetiche a base ereditaria posso essere causate da: • mutazioni costitutive in un singolo gene (in alcuni casi può esservi l’interazione con fattori ambientali) ⇓
ereditarietà monogenica • mutazioni costitutive in più geni, frequentemente in associazione con fattori ambientali ⇓
ereditarietà poligenica • ereditarietà cromosomica/eredidarietà mitocondriale 35
APPLICAZIONI DELLA GENETICA RISVOLTI GIURIDICI c) test genetici predittivi e presintomatici test presintomatici: identificano, in un soggetto non ammalato, una condizione relativa a una malattia che inevitabilmente si svilupperà nel corso della vita (corea di Huntington); test predittivi: identificano un aumento o una diminuzione del rischio di contrarre in futuro una data malattia o suscettibilità (BRCA1, BRCA2, gene APC)
Convenzione di Oviedo (1997) I test predittivi sono consentiti solo a fini medici o di ricerca legata alla tutela della salute , e con una consulenza genetica appropriata (art. 12). QUESITO Si può vietare a una persona di conoscere la propria condizione genetica, anche con la consapevolezza del basso tasso di predittività che la diagnosi di una mutazione può comportare? 36
APPLICAZIONI DELLA GENETICA RISVOLTI GIURIDICI c) test genetici predittivi e presintomatici
il caso Katskee (1996, US) il caso: • Una giovane donna americana (Katskee) effettua un test genetico dal quale emerge la sua predisposizione al tumore dell ovaio; • Si sottopone a rimozione chirurgica profilattica di ovaie e utero; • La sua assicurazione nega il rimborso in quanto non riconosce la donna come malata ; • I giudici condannano la compagnia a pagare sulla base del concetto di atto medicalmente necessario, che rientra nel contratto di assicurazione sanitaria.
QUESITI Come si definisce la malattia? Qual è la differenza tra sintomo e malattia? Può dirsi malato chi ha solo il rischio di ammalarsi? Qual è il criterio rilevante per il diritto ? Possono i giudici interpretare in modo estensivo una clausola contrattuale?
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Genetic testing and the Council of Europe • Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine - ETS no. 164 (known as Oviedo Convention)
• Additional Protocol to the Convention on Human Rights and Biomedicine, concerning the Genetic Testing for Health Purposes - May 7th, 2008 • Explanatory Report to the Additional Protocol to the Convention on Human Rights and Biomedicine, concerning the Genetic Testing for Health Purposes
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Oviedo Convention
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The Additional Protocol on Genetic Testing at a glance (a) Chapter I – Object and scope Article 1 – Object and purpose Article 2 – Scope Chapter II – General provisions Article 3 – Primacy of the human being Article 4 – Non-discrimination and non-stigmatisation Chapter III – Genetic services Article 5 – Quality of genetic services Article 6 – Clinical utility Article 7 – Individualised supervision Chapter IV – Information, genetic counselling and consent Article 8 – Information and genetic counselling Article 9 – Consent Chapter V – Persons not able to consent Article 10 – Protection of persons not able to consent Article 11 – Information prior to authorisation, genetic counselling and support Article 12 – Authorisation 41
The Additional Protocol on Genetic Testing at a glance (b) Chapter VI – Tests for the benefit of family members Article 13 – Tests on persons not able to consent Article 14 – Tests on biological materials when it is not possible to contact the person concerned Article 15 – Tests on deceased persons Chapter VII – Private life and right to information Article 16 – Respect for private life and right to information Article 17 – Biological samples Article 18 – Information relevant to family members Chapter VIII – Genetic screening programmes for health purposes Article 19 – Genetic screening programmes for health purposes Chapter IX – Public information Article 20 – Public information Chapter X – Relation between this Protocol and other provisions and reexamination of the Protocol 42
Is genetic testing exceptional ?
The concept of exceptional implies that existing ethical and legal rules are not able to face the new problems
and
we have to create new ones.
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Is genetic testing exceptional ?
Article 5 – Quality of genetic services
[...] a genetic tests meet generally accepted criteria of scientific validity and clinical validity;
[...] a quality assurance programme is implemented in each laboratory è...] persons providing genetic services have appropriate qualifications to enable them to perform their role in accordance with professional obligations and standards.
Article 6 – Clinical utility
Clinical utility of a genetic test shall be an essential criterion for deciding to offer this test to a person or a group of persons.
Article 8 – Information and genetic counselling
When a genetic test is envisaged, the person concerned shall be provided with prior appropriate information in particular on the purpose and the nature of the test, as well as the implications44of its results.
Is genetic testing exceptional ?
Article 9 - Consent
A genetic test may only be carried out after the person concerned has given free and informed consent to it.
Article 10 – Protection of persons not able to consent
Subject to Article 13 of this Protocol, a genetic test on a person who does not have the capacity to consent may only be carried out for his or her direct benefit.
Chapter VI – Tests for the benefit of family members
Article 13 – Tests on persons not able to consent
[...] the law may allow a genetic test to be carried out, for the benefit of family members, on a person who does not have the capacity to consent, if [...] the purpose of the test is to allow the family member(s) concerned to obtain a preventive, diagnostic or therapeutic benefit that has been independently evaluated as important for their health, or to allow them to make an informed choice with respect to procreation; [...] the benefit envisaged cannot be obtained without carrying out this test;
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Is genetic testing exceptional ?
Assumed that the Protocol is on genetic testing for health purposes:
Quale di queste regole non potrebbe essere applicata a altri trattamenti medici?
O Quale di queste regole non funzionerebbe se applicata a altri trattamenti medici?
(HIV, tuberculosis ...)
Ma allora, perché dovremmo avere regole così particolari per la genetica e i test genetici?
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Genetic Exceptionalism?
• Is there any clear demarcation that separates genetic data from other health data? • Can physicians always differentiate genetic information from other information in a medical record? • Does genetic data have a more stigmatizing effect than other personal information related to mental health, HIV, STD and others?
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Genetic Exceptionalism? In other words, the need for overtaking exceptionalism seems to reach the target in all cases where • the question is strictly related to medical data as individual data • and privacy rules can be adapted and made to work.
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Genetic Exceptionalism?
Is the argument over exceptionalism sound in all the fields of application of genetics?
What about the almost unique property of genetic data: familiarity? 49
How do genetics affect family ties ?
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What about people able to consent ?
The general rule of informed consent ?
Article 18 – Information relevant to family members
Where the results of a genetic test undertaken on a person can be relevant to the health of other family members, the person tested shall be informed.
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Article 8 – Information and genetic counselling
1 When a genetic test is envisaged, the person concerned shall be provided with prior appropriate information in particular on the purpose and the nature of the test, as well as the implications of its results.
2 For predictive genetic tests as referred to in Article 12 of the Convention on Human Rights and Biomedicine, appropriate genetic counselling shall also be available for the person concerned. […]
The form and extent of this genetic counselling shall be defined according to the implications of the results of the test and their significance for the person or the members of his or her family […].
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140. For the communication of this information to the family members, appropriate provisions should be made, bearing in mind the rules on confidentiality and the protection of the private life of the various persons concerned (person on whom the test is performed and members of his or her family).
The choice of procedure(s) is left to the States. If the person tested is unable or unwilling to contact his or her family members directly he or she may be given appropriate material or letters to pass on to the family member(s). Consideration could be given to setting up a mediating body responsible for contacting family members of the person concerned if the latter has asked for them to be informed without him or herself being identifiable as the source of the information.
Another example, would be the possibility to provide for a decision by a competent body, following comparative assessment of the respective interests of the persons concerned, on whether or not the information in question must be communicated to the members 53of the family.
Two questions:
a) On information and consent:
•
Are provisions on information an adequate safeguard ?
•
If informed consent is the rule, informed refusal should be considered on an equal basis ?
•
What are the consequences ?
b) Family members or biological group ?
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a) On information and consent: How to deal with the conflicts within the biological group?
Question: Do the privacy rules cover all the conflicts arising in those situations ? • if sharing data gives each “share-holder” a right of (non)disposal of data of the other “share-holders”, we would no longer have any genetic privacy. • What response to the share-holders who need to know more about the genetic data of other shareholders for health reasons ? 55
Case law
(i)
the Icelandic Supreme Court decision (27 November 2003), who upheld the right of a woman to prohibit the transfer of the died father’s information into the national database;
(ii) the decision of an Italian Administrative Court (Tribunale Amministrativo Regionale Veneto, 30 gennaio 2003) on the right of a woman to have access to her sister’s medical data, which were collected in a hospital repository; (iii) the decision issued by the Garante per la protezione dei dati personali (Italy, 1999); (iv) Tribunal of Milan, 2008, on a deceased person (v) .... Other cases.... 56
a) On information and consent: How to deal with the conflicts within the biological group?
Each member of a biological group shares, to some extent, its genetic dowry with the members of the same genetic line or collateral relatives.
• Se ognuno condivide una parte del proprio patrimonio genetico con i membri del proprio gruppo biologico, si può continuare a dire che ognuno ha il proprio patrimonio genetico?
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Where do we draw the boundary line?
the relatedness between two brothers (apart from monozygotic twins who share 100% of their genome sequence) is 50% on average.
Child grandparent pairs or child uncle pairs tend to share 25% of the variable portion of their genome.
Likewise, first degree cousins and child greatgrandparent pairs share 12.5% and, going further in genetic relatedness,
second degree cousins only 3.1% of the variable portion of 58 their genome.
b) Family v. biological group
“Due to the special nature and characteristics of genetic data and the impact their use may have on the individual's life and on the members of his family, it is very important to determine the purposes for which genetic data may be processed.
[…] Thus, a new, legally relevant social group can be said to have
come into existence – namely, the BIOLOGICAL GROUP, the group of kindred as opposed, technically speaking, to one’s family. Indeed, such group does not include family members such as one’s spouse or foster children, whereas it also consists of entities outside the family circle – whether in law or factually – such as gamete donors or the woman who, at the time of childbirth, did not recognise her child and requested that her particulars should not be disclosed – this right being supported in certain legal systems”.
European data protection Working Party art. 29 of the Working Document on Genetic 59 Data
(17 March 2004)
b) Family v. biological group
Council of Europe, Recommendation 1997(5). Point 58 of Memorandum:
the
“The collection and processing of genetic data involves the storage of data concerning third parties. These third parties may be constituted by members of the data subject's genetic line or collateral relatives or members of his/ her social family…
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b) Family v. biological group
The drafters agreed to accord an intermediate status to members of the data subject's genetic line
so as to distinguish them from third parties in the strict sense of the term and to grant them a hybrid legal protection.”
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b) Family v. biological group
One of the fundamental features of genetic data consists both in its marking out an individual from others and the fact that this data – and more precisely: the characteristics to which it refers - is structurally shared by all the members of the same biological group. ARTICLE 29 Data Protection Working Party Working Document on Genetic Data (17 March 2004)
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b) Family v. biological group
Given the highly sensitive nature of this issue, a balance must be found between a data subject s right not to disclose hits or her genetic information and the potential serious implications the disclosure and use of such information could have on the members of a biological family. ARTICLE 29 Data Protection Working Party Working Document on Genetic Data (17 March 2004)
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The problem
We have no definition of the concept of ü intermediate status ü hybrid legal protection ü balance of rights .
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As a consequence • Legal criteria, according to which such a hybrid or intermediate status should be defined • and the way of managing the conflicts among third parties having an intermediate status are dramatically unclear.
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Penale o passare a “Consenso”
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DNA penale
The Dobbiaco murder an elderly wowan is raped and wildly murdered. The crime takes place in a small mountain village near the town of Dobbiaco, in Alto Adige region.
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The fact • An elderly woman is raped and wildly murdered. • The crime takes place in a small mountain village near the town of Dobbiaco, in Alto Adige region. • Nothing was taken away by the murder, not even the victim’s wallet which was found by the Police on a table
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The evidence • No witness was able to help the Police. Investigators can only rely on two facts: • the victim’s house is located in an isolated place; the same village rises in an isolated valley. According to the above evidence, detectives are confident that the murder was likely to live in that area; • DNA testing on biological samples collected during the investigation developed the murderer’s DNA profile.
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The investigation • All the inhabitants of the village were asked to
give voluntarily a saliva sample; • DNA testing on that samples; • DNA profiling of all the donors; • Comparison between the murderer’s DNA profile and the DNA profiles obtained by the inhabitants of the village.
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The outcome • A match was found between the murderer’s profile and a profile obtained from an elderly inhabitant of the village. • The murderer belonged to the familial group of the elderly donor; • The elderly donor’s young son was briefly questioned by the Police; • The indicted person confessed: he was sentenced to a 24 year prison-term 72
..a starting point Investigators can only rely on two main facts: • origin of the murderer from the same territory of the victim; • murderer s Dna profile obtained by semen samples detected on the victim s body
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..and the following investigations • all the inhabitants of the village are asked to give voluntarily a saliva sample; • DNA testing on that samples; • DNA profiling of all the donors; • comparison between the murderer’s DNA profile and the DNA profiles obtained by the inhabitants of the village.
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A succesfully outcome • a partial match is found between the murderer’s profile and a profile obtained from an elderly inhabitant of the village. • the expert can affirm that the murderer belongs to the family circle of the elderly donor;
• the elderly donor’s young son is questioned by the Police; • the indicted person confesses: he is condemned to a 24 year prison-term
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The Harman case • Mr. Harman throw a brick from a bridge, which crashed through a lorry windscreen; • the brick hits driver’s chest and kill him; • Police obtains the offender’s DNA profile from blood left on the brick; • thanks to familial searching, Police identify a brother of the offender who was in the NDNAD; • Police question Mr. Harman and he confesses the crime
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Familial DNA searching • used in twenty cases in UK (succesfully in five cases) • routinely used in many other countries (i.e. USA..) On this base, we can affirm that: in the perspective of criminal investigations genetic data sharing is undoubtedly an helpful characteristic
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It is necessary to find the right balance between the needs of police investigations and people s civil rights
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• In the Dobbiaco case all the inhabitants, that voluntarily gave the biosample, acted with the reasonable aim to be discharged from any possible suspect, but: Ø Does the Police informed the inhabitants that the DNA test could also lead to their relatives’ indictment ? Ø Was this piece of information necessary according with the right to a due process and the inhabitants’ right to privacy ?
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• Art. 199 code crim. proc. law. : anyone can refuse testimony against his close relatives. The witness must be informed aboust his right to refuse testimony. If he is not informed, the testimony is void. To give a saliva sample for a DNA analysis is something similar of rendering a testimony. But the inhabitants were not informed about the possibility to detect one of their relatives thanks to their biological samples. They did not have the possibility to make a conscious (informed) decision.
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• UK NDNAD holds more then 2.5 million profiles collected from charged criminal and suspects. Is not allowed to collect and enter into the Database profiles from people without any criminal conviction.. But, the sharing of genetic data among the members of the bio familial group, leads to enlarge indirectly the DNA Databank to all the biological relatives of charged criminals
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• NDNAD Annual Report 2002-2003 states that: “has recently sought advice from the Information Commissioner on the ethics and data protection issues of using this new approach (the familial searching) more widely and will be issuing guidelines in the near future” • The ACPO (Association of Chief Police Officer), as yet no publicly available guidelines have been issued, decide to suspend for a short time the use of familial searching • The Human Genetic Commission recommended the use of familial searching only in most serious offenses
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• Massachusetts Regs. Code 515 § 2.14: Mutual Exchange, Use and Storage of Dna Records. “Loci requirements. For purposes of searches of the DNA Database, a minimum of four loci shall be provided by a laboratory or other authorized agency requesting a casework (forensic) search against the DNA Database. Notwithstanding this requirement, the laboratory or other authorized agency may, at is discretion, request that a search can be performed using fewer loci if there are scientific reasons which support using fewer than four loci in a particular case…”
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• New York Comp. Codes R. & Regs. 9 § 6192.3: Forensic DNA methodology “.. Casework evidence Dna profiles to be maintained in the Dna databank shall be comprised of information for at least six of the STR loci or other combinations of loci using alternative technologies approved for use in the NDIS Standards for Acceptance of Dan Data. This requirement for a minimum number of loci applies only to those casework evidence Dna profiles which an authorized laboratory desires to have maintained in the forensic index of the Dna databank. For purposes of searches of the Dna databank, a minimum of four loci shall be provided by a laboratory requesting a casework search against the Dna 84 databank.”
• The Future of Forensic DNA Testing, Nationa Judicial Institute, washington D.C., 2000 “with 13 STR loci it is quite likely that a search of a database will identify a person who is relative of the person contributing the evidence sample. We discussed earlier a pair of profiles that almost certainly came from siblings, and parent-child combinations can also be identified. Other close relatives may also be identified, but with less certainty. Suppose a crime scene profile shows a partial match with someone in the database. Are law enforcement officers entitled to investigate the relatives ? “
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Questions • Can the familial DNA searching violate the familial group’s right to privacy ? • What measures are to be adopted in order to protect this right to privacy ? • Do we need strong guidelines for the use of DNA fingerprinting ? • How to find a balance between individual rights and the needs of police investigations ? • Do we need a “European” approach to this topics ?
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