Legislating at the EU Level:
Possibilities and Challenges
avv.
avv. Delia Ferri
Ferri,, Ph.D
delia.ferri@hotmail.it
Conference
“GENETIC DISCRIMINATION
TRANSATLANTIC PERSPECTIVES ON THE CASE
FOR A EUROPEAN LEVEL LEGAL RESPONSE”
Centre for Disability Law and Policy
National University of Ireland-Galway
19 November 2011
The EU has shown growing concerns regarding
the use of biotechnology and genetic tests…
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(1989) EP Res. on the Ethical and Legal Problems
of Genetic Engineering provided for the
Confidentiality of Genetic Information
(1996) EP Res. on the Protection of Human Rights
and Dignity with regard to the Application of Biology
and Medicine
(2004) Report requested by the Commission
“Ethical, legal and social aspects of genetic testing:
research, development and clinical applications”
(2011) Court of Justice, 18 October 2011, Brustle
v. Greenpeace, C-34/10 on the exclusion from
patentability concerning the use of human embryos
for industrial or commercial purposes of Dir. 98/44
19 November 2011
Legislating at the EU Level:
Possibilities and Challenges
1)
2)
3)
Considering the EU “constitutional”
framework, does the EU have competence
to legislate on the protection of genetic
data and on genetic discrimination? Can the
conclusion of the UN CRPD enhance an EU
regulation on genetic discrimination?
Might genetic data be protected through the
EU rules on data protection currently in
force? Might genetic discrimination be
“covered” by the EU directives currently in
force?
Would it be feasible and appropriate to
amend the existing directives? Would it be
more appropriate to adopt a new nondiscrimination (genetic information)
directive?
19 November 2011
Legislating at the EU Level:
Possibilities and Challenges
“Privacy approach”:
to protect EU
citizens from
disclosure of
genetic information
19 November 2011
“Non-discrimination
approach”: to ensure
EU citizens are not
discriminated against
on the ground of
genetic information
EU Competence to Legislate
The EU has competence to rule
on the protection of genetic data
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Art.16 paras. 1 and 2 TFEU
“Everyone has the right to the protection of
personal data concerning them.
The European Parliament and the Council, acting
in accordance with the ordinary legislative
procedure, shall lay down the rules relating to
the protection of individuals with regard to the
processing of personal data by Union institutions,
bodies, offices and agencies, and by the Member
States when carrying out activities which fall
within the scope of Union law, and the rules
relating to the free movement of such data.
Compliance with these rules shall be subject to
the control of independent authorities”
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Art. 8 EU Charter of Fundamental
Rights
19 November 2011
The EU has a solid crosscross-cutting competence
on nonnon-discrimination on different grounds
•
The principle of non-discrimination and equality
is firmly embedded in the Treaties:
 Art. 2 TEU (Values of the EU)
 Art. 3 TEU (Aims of the EU)
 Art. 6 TEU (Fundamental Rights)
 Art. 10 TFEU (Non-discrimination crosscutting clause)
 Art. 18 TFEU (Non discrimination on the
ground of nationality)
 Art. 19 TFEU (Non discrimination on different
grounds)
 Article 157 (Equal Pay)
19 November 2011
Art. 19 TFEU (former Art. 13 EC)
“Without prejudice to the other provisions of the Treaties and
within the limits of the powers conferred by them upon
the Union, the Council, acting unanimously in accordance
with a special legislative procedure and after obtaining the
consent of the European Parliament, may take appropriate
action to combat discrimination based on sex, racial or
ethnic origin, religion or belief, disability, age or sexual
orientation.
By way of derogation from para.1, the European Parliament
and the Council, acting in accordance with the ordinary
legislative procedure, may adopt the basic principles of Union
incentive measures, excluding any harmonisation of the laws
and regulations of the Member States, to support action
taken by the Member States in order to contribute to the
achievement of the objectives referred to in para.1”.
19 November 2011
Article 21 para. 1 EU CFR

Art. 10 and Art. 19 TFEU do not mention “genetic
information” or “health” as a ground of
discrimination. By contrast, “genetic features”
are included as a ground of discrimination in Art.
21 para. 1 of the EU Charter of Fundamental
Rights:
“Any discrimination based on any ground
such as sex, race, colour, ethnic or social
origin, genetic features, language,
religion or belief, political or any other
opinion, membership of a national
minority, property, birth, disability, age or
sexual orientation shall be prohibited”
19 November 2011
Article 21 para. 1 EU CFR
Art. 21(1) does not
create any power to
enact antidiscrimination laws in
the areas of
competence of the
Member States,
therefore does not
alter the extent of
powers granted under
Art. 19 TFEU nor the
interpretation given to
it.
The EU CFR has become
binding through Art. 6
para. 1 TEU, “has become
the reference text and the
starting point for the CJEU's
assessment of the
fundamental rights” (Joint
Comm. from Pres. Costa
and Skouris- Jan 2011),
and should be taken into
account throughout the
policy cycle (COM(2010)
543 fin; COM(2010) 573
fin)
19 November 2011
Considering this constitutional framework,
can the EU legislate on genetic
discrimination?
Genetic testing can predict a low or high
probability of future disability, or can predict
that certain genotypes will experiment
disability in the future.
Although Art. 19 TFEU itself does not mention
‘genetic information’ or ‘health’ as a
prohibited ground, it could be a suitable legal
base for a piece of legislation on genetic
discrimination, through an extensive
interpretation of the ground of disability, in
light of Art. 21 EU CFR.
19 November 2011
Considering this constitutional framework,
can the EU legislate on genetic
discrimination?
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Extensive interpretation?
The CJEU has thus far shown a certain
.
restraint
in its interpretation of the grounds
contained in Art. 19 TFEU (former 13 EC) and
in the Directives based on this provision (
Part. II), and its acceptance of ‘new’ grounds
of discrimination [see Case C- 303/06, S.
Coleman v. Attridge Law and Steve Law; Case
C-13/05, Sonia Chacón Navas v. Eurest
Colectividades SA].
However this interpretation could be
considered in line with Art. 21 EU CFR (and
with Art. 1 and 3 EU CFR)
19 November 2011
The conclusion of the UN CRPD
by the EC/EU
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After having been a
signatory, the EC (now EU)
acceded to UN Convention on
the Rights of Persons with
Disabilities, with the Council
Decision 2010/48/EC,
formally adopted on 26
November 2009, under the
former EC Treaty.
The instrument of ratification
was deposited in December
2010, and the Convention
entered into force in the EU
on 22 January 2011
19 November 2011
Status of the UN CRPD
in the EU Legal Order
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The Union is bound by the Convention to the extent of
its area of competence, specified in the ‘Declaration of
Competence’ annexed to Council Decision 2010/48/EC.
According to Art. 216(2) TFEU (former Art. 300(7) EC)
international agreements concluded by the EU are
binding for the EU institutions as well as for the
Member States.
“In accordance with case-law, mixed
agreements concluded by the Community,
its Member States and non-member
countries have the same status in the
Community legal order as purely
Community agreements in so far as the
provisions fall within the scope of
Community competence” [Case C-239/03,
Etang de Berre, at (25)]
19 November 2011
The conclusion of the UN CRPD by the
EC/EU is of particular significance....
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Art. 1 para. 2 UN CRPD
“Persons with disabilities include those who
have long-term physical, mental, intellectual or
sensory impairments which in interaction with
various barriers may hinder their full and
effective participation in society on an equal
basis with others”
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The principle of equality and non discrimination
animates the Convention (Art. 3, Art. 5 UN
CRPD)
19 November 2011
Parties to the UN CRPD are required
inter alia:
To combat any form of discrimination i. e. “any distinction,
exclusion or restriction on the basis of disability which has
the purpose or effect of impairing or nullifying the
recognition, enjoyment or exercise, on an equal basis with
others, of all human rights and fundamental freedoms in the
political, economic, social, cultural, civil or any other field. It
includes all forms of discrimination, including denial of
reasonable accommodation” (Art. 2 UN CRPD)
Discrimination on the basis of disability as intended in the UN
CRPD includes all forms of discrimination; direct, indirect,
structural, multiple or other, as well as discrimination by
association and discrimination based on assumed or future
disability (EFC Study, Final Report, p. 54)
Consequentially any EU legislation in the field of
genetic discrimination could be regarded as
implementation of the Convention.
19 November 2011
EU Secondary Law currently in
force
Directive 95/46/EC on the protection of
personal data
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Dir. 95/46/EC is the main reference text, at
European level, on the protection of personal
data
The Directive does not mention genetic data,
but according to its Art. 8 it is forbidden to
process personal data concerning health
The Directive states that data processed must
be accurate and not excessive in relation to
the purposes for which it was collected.
[http://europa.eu/legislation_summaries/information_society/dat
a_protection/l14012_en.htm]
19 November 2011
The Commission is working to modernise
the EU rules on data protection
“In the light of technological and other
societal developments, there is a need
to reconsider the existing provisions on
sensitive data, to examine whether
other categories of data should be
added and to further clarify the
conditions for their processing. This
concerns, for example, genetic data
which is currently not explicitly
mentioned as a sensitive category of
data” (COM (2010) 609 fin)
19 November 2011
EP Res. of 6 July 2011 on a comprehensive
approach on personal data protection in
the EU
The EP “supports further clarification
and reinforcement of guarantees on
the processing of sensitive data,
and calls for reflection on the need
to deal with new categories such as
genetic and biometric data,
especially in the context of
technological (e.g. cloud computing)
and societal developments”
[http://www.europarl.europa.eu/oeil/file.jsp?id=5894592]
19 November 2011
On the basis of former Art. 13 EC, a “Non“NonDiscrimination Package” was adopted in
2000
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This package included two non-discrimination
directives: Directive 2000/78, and Directive 2000/43
Council Directive 2000/78/EC (establishing a
general framework for equal treatment in
employment and occupation) implements the
principle of equal treatment in the area of
employment and prohibits discrimination on various
ground, including disability
Council Directive 2000/78/EC defines
discrimination as including direct and indirect
discrimination, as well as harassment and instruction
to discriminate, and such discrimination is prohibited
in employent and training related areas.
19 November 2011
Directive 2000/78
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Directive 2000/78 does not cover discrimination
on the ground of genetic features
BUT
The ground of disability could be interpreted
extensively to cover genetic discrimination (
Part. I)
Genetic discrimination might be combated by
application of the concept of indirect
discrimination on the grounds provided for by
the Directive, and on the grounds of racial or
ethnic origin provided for in Dir. 2000/43
19 November 2011
The scope of the Dir. 2000/78 is
narrow...
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The Commission published a proposal for an additional
Directive in July 2008, to complement the existing
directive. The proposed Directive (COM(2008)425)
aims at prohibiting discrimination on the grounds of
religion or belief, disability, age and sexual orientation
in areas outside of employment.
The proposal has a material scope analogous to the one
of Dir. 2000/43
The proposal is confined to addressing some of the
perceived shortcomings of Dir. 2000/78 and it does
not attempt to make a wider reform of EU antidiscrimination legislation (see M. Bell, L.
Waddington)
[Http://europa.eu/legislation_summaries/human_rights/fundamental
_rights_within_european_union/em0008_en.htm]
19 November 2011
The Proposal for a Directive on
Implementing the Principle of Equal
Treatment:
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Does not mention “genetic features” or “health” as a
ground of discrimination
Does not contain any definition of the discrimination
grounds, (but a definition of “persons with disabilities”
in line with the UN CRPD has been included in the
current amended proposal; see L. Wadddington)
Does not expressly address the issues of discrimination
based on an assumption (neither discrimination based
on association, nor multiple discrimination)
Through Art.2(7) authorises “proportionate differences
in treatment” in financial services, provided that “age
or disability is a key factor in the assessment of risk
based on relevant and accurate actuarial or statistical
data”.
19 November 2011
III. CONCLUDING REMARKS
19 November 2011
Which tentative conclusions can be
drawn from the analysis?
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19 November 2011
Which amendements
to existing
Directives should be
provided for? Would
they be sufficient?
Should a new
Directive on genetic
discrimination be
passed?
Modifying the EU Directive on
the Protection of Data
The modification of the EU
rules on the protection of
data is under discussion
and a provision on the
protection of genetic data
is already envisaged
A “privacy approach” to
the protection of genetic
data in the EU seems
feasible and does not
provide “difficulties” from
the point of view of the
sharing of competences.
19 November 2011
Modifying the EU Directive on
the Protection of Data
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The modification of the EU rules
on data protection seems useful to
protect aspects of confidentiality
of information.
But the problem of genetic
discrimination cannot be
addressed purely by reference the
right to privacy of genetic data.
Unjustified disadvantage based on
unalterable genetic characteristics
should also be prohibited
(combination of privacy and
non discrimination approach)
19 November 2011
Amending EU Equality Law?
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Considering Art. 19 TFEU read in conjunction
with Art. 9 TFEU, and Art. 21 EU CFR, the
modification of Dir. 2000/78 and the
amendment of the proposal for a new directive
to include genetic discrimination would probably
be feasible from a legal point of view and would
take less time
A new Directive on non discrimination on the
use of genetic data based on Art. 19 TFEU read
in conjunction with Art. 9 TFEU, Art. 21 EU CFR
and with the UN CRPD seems to be feasible
from a legal point of view, but it may prove
problematic to adopt it
19 November 2011
A new horizontal Directive?
Directive?
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19 November 2011
Material scope?
Definition of
genetic data and
genetic tests?
Relation with
other grounds?
Multiple
discrimination?
???
Thank you
for your attention
attention!!
“Legislating at the EU Level: Possibilities and
Challenges”
Avv. Delia Ferri, Ph.D
delia.ferri@hotmail.it