family - Giurisprudenza Unimi - Università degli Studi di Milano

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
amedeo.santosuosso@unipv.it
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
4
L’ordine giuridico patriarcale
5
6
7
New Jersey
v.
Japan
8
What about these cases/situations ?
I decide how/when my life ends!
9
What about these cases/situations ?
Each individual is able to decide how/
when her/his own life ends!
10
What about these cases/situations ?
Each individual is able to decide how/
when her/his own life ends!
11
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
12
On Liberty
by John Stuart Mill
13
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…” 14
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
18
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.”
23
24
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).
29
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?
37
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
38
39
Oviedo Convention
40
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.
43
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;
45
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?
46
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?
47
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.
48
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 ?
50
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.
51
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 […].
52
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 ?
54
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?
57
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…
60
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.”
61
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)
62
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)
63
The problem
We have no definition of the concept of
ü  intermediate status
ü  hybrid legal protection
ü  balance of rights .
64
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.
65
Penale o passare a “Consenso”
66
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.
68
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
69
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.
70
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.
71
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
73
..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.
74
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
75
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
76
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
77
It is necessary to find the right balance
between the needs of police investigations
and people s civil rights
78
•  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 ?
79
•  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
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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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