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Болтанова Елена Сергеевна,
Болтанова Елена Сергеевна
доктор юридических наук, доцент, заведующий кафедрой гражданского права Национального исследовательского Томского государственного университета, профессор Томского …
Имекова Мария Павловна
Имекова Мария Павловна
кандидат юридических наук, доцент кафедры гражданского права Национального исследовательского Томского государственного университета
В последние несколько десятилетий как на международном уровне, так и на уровне отдельных стран особую актуальность приобрели вопросы, связанные с правовым регулированием генетических исследований и правовым режимом полученной на их основе генетической информации. Однако Россия относительно недавно пришла к осознанию необходимости законодательного регулирования соответствующих отношений. При этом отличительной чертой такого регулирования является акцент на публично-правовые аспекты, а гражданско-правовые аспекты остались без должного внимания.
Для определения гражданско-правового режима генетической информации имеет принципиальное значение разграничение генетических сведений и генетических данных. Генетические сведения представляют собой персонифицированную генетическую (геномную) информацию (сведения), поскольку имеют индивидуальный, персональный характер, как относящуюся прямо или косвенно к определенному или …
Bulletin of Kemerovo State University Series Humanities and Social Sciences,
Год журнала:
2020,
Номер
2020(2), С. 146 - 152
Опубликована: Окт. 2, 2020
The
article
features
the
problem
of
consolidating
and
understanding
digital
sovereignty
State
individual.
author
addresses
challenge
establishing
a
correlation
between
idea
global
socio-political
change.
paper
focuses
on
effect
modern
trends
social
development,
i.e.
accelerated
informatization
globalization,
development
doctrine
its
legal
design.
believes
that
is
reaction
to
transformation
order,
which
resulted
in
new
doctrinal
provisions
norms.
They
give
citizens
right
determine
process
formation,
storage,
management
data,
as
well
ensure
their
inviolability.
formalization
can
indicate
either
protection
statehood
personality
or,
contrary,
absorption
by
structures
order.
As
result,
such
categories
"sovereignty,
"statehood,
or
"personality"
may
eventually
lose
actual
meaning
real
content.
conceptualization
phenomenon
neurosovereignty
implementation
programs
might
be
future
theory
practice
sovereignty.
Lex Russica,
Год журнала:
2020,
Номер
7, С. 50 - 58
Опубликована: Июль 23, 2020
The
importance
of
genomic
information
has
now
increased
due
to
the
possibility
its
practical
use.
Meanwhile,
understanding
term
“genomic
information”
is
specified
based
on
different
criteria.
Genomic
proposed
be
classified
depending
following
criteria:
1)
origin
a
biological
sample,
2)
place
fixation
and
storage
information,
3)
purpose
use,
4)
completeness
examination,
5)
relation
person
acquisition
his
or
her
6)
scope
content.
can
presented
as
generic
concept
referring
all
objects,
special
(species)
only
humans,
subspecies
reflecting
specificity
such
in
particular
area
activity.
living
being
(human,
animal,
plant,
microorganism)
understood
data
certain
fragments
deoxyribonucleic
acid
(sometimes
ribonucleic
acid)
basis
which
identified
other
permitted
activity
carried
out.
Human
defined
biometric
personal
extracted
from
individual
corpse,
it
possible
identify,
determine
genetic
predispositions
extract
patterns
development
human
obtained
voluntarily,
and,
cases
provided
for
by
law,
forced
fixed
sample
and/or
stored
an
map
database.
It
proved
that
existing
laws
new
law
dedicated
regulation
application
technologies
should
amended
instead
adopting
“On
Genetic
Information”.
Вестник Пермского университета Юридические науки,
Год журнала:
2020,
Номер
50, С. 638 - 649
Опубликована: Янв. 1, 2020
Introduction:
along
with
major
civilizational
revolutions,
the
past
50
years
have
seen
advances
of
biotechnological,
or
genetic,
revolution.
It
has
resulted
in
development
industries
such
as
transplantology,
pro-creative
technologies,
gerontology,
etc.,
which
led
to
a
sharp
change
anthropological
situation
and
transformation
human
corporeality.
Due
biotechnological
revolution,
people
learned
how
diagnose
treat
hereditary
diseases,
life
expectancy
increased,
birth
control
became
possible.
This
revolution
gave
rise
new
conceptual
language,
structure
concept
‘genomic
information’
occupies
most
important
place.
Purpose:
article
is
devoted
analysis
substantiation
areas
legal
impact
on
results
genomic
research,
caused
by
technological
modernization
information
processes
occurring
chemical,
biological,
medical
science
practice.
To
achieve
this
goal,
authors
study
problems
arising
from
circulation
analyze
directions
objects
appearing
result
research.
Methods:
methodological
framework
research
based
universal
(philosophical),
general
scientific,
specific
(including
special
legal)
scientific
methods:
dialectical,
logical,
concrete
historical,
sociological,
comparative
formal
legal.
The
specificity
subject
determined
use
systems
approach.
Results:
we
can
distinguish
three
aspects
‘genome’:
functional,
informational,
axiological.
genome
defined
different
ways
depending
chosen;
accordingly,
means
elements
are
used
within
each
aspects.
Legal
relations
being
focus
legislators'
attention
significant
influence
choice
impact.
Conclusions:
today
it
necessary
seek
solutions
legally
ensure
establishment,
regulation,
protection
social
field
also
supplement
current
legislation
Russian
Federation
norms
protective
nature
that
would
prohibit
employers
other
organizations
demanding
requesting
genetic
tests
condition
for
hired
receiving
benefits.
Вестник Пермского университета Юридические науки,
Год журнала:
2021,
Номер
52, С. 263 - 284
Опубликована: Янв. 1, 2021
Introduction:
the
article
deals
with
some
basic
legal
issues
that
arise
from
use
of
human
genetic
information.
There
exist
defining
nature
such
information,
which
we
identify
in
article.
Current
regulation
is
not
able
to
take
into
account
peculiarities
information
and
provide
an
effective
protection
against
misappropriation
improper
when
carrying
out
diagnostics,
working
biomaterials.
At
moment,
special
public
law
civil
procedure
for
obtaining,
accumulating,
processing,
accessing,
protecting
required.
Purpose:
develop
a
conception
field
rights
using
propose
possible
ways
resolving
those,
done
based
on
analysis
scientific
works
as
well
international
Russian
legislation.
Methods:
empirical
methods
comparison,
description,
interpretation;
theoretical
formal
dialectical
logic.
Specific
methods:
legal-dogmatic
method
interpretation
norms.
Results:
order
overcome
associated
it
necessary
system
guarantees
aimed
at
ensuring
respect
dignity,
interests
individual,
their
prevent
harm
its
use.
Conclusion:
threat
illegal
violation
rights,
government
must
number
important
measures
introduce
amendments
supplements
statutory
regulations:
individual
acquire
status,
namely,
be
set
apart
group
personal
biometric
form
independent
type
data
restricted
access
kinship
(blood)
relationship
between
third
parties
carrier
information;
bring
provisions
legislation
line
Law
Personal
Data;
legislatively
specify
regime
preservation
obtained
result
gene
diagnostics
framework
activities
biobanks.
Such
would
make
unified
right
combination
norms
private
life.
General Reanimatology,
Год журнала:
2024,
Номер
20(3), С. 65 - 74
Опубликована: Июнь 4, 2024
Objective:
to
formulate
recommendations
and
proposals
for
improving
legislation
in
the
field
of
protection
genomic
genetic
information,
including
those
obtained
as
a
result
medical
diagnostics.
Materials
methods.
We
analyzed
18
regulatory
legal
acts,
4
international,
3
acts
foreign
states,
11
domestic
judicial
practice
area
under
study.
In
addition,
scientific
works
on
this
topic
were
analyzed.
course
study,
we
used
formal-logical,
dogmatic,
comparative
method
axiological
approaches.
Results.
formulated
concepts
information
demonstrated
differences
between
these
concepts.
showed
topical
issues
protection,
identified
problems
regulation
relevant
relations,
regulation.
Conclusion.
Based
performed
research
results,
recommend:
1.
To
incorporate
Russian
Federation
principle
that
would
allow
use
further
depending
certain
cases
using
criteria-based
approach,
when
such
should
meet
important
public
interests,
example,
contributes
developing
methods
treatment
serious
socially
significant
diseases.
2.
Regulate
relations
obtaining
consent
biological
material
purposes
(for
within
framework
Federal
Law
"On
Personal
Data").
3.
define
No.
86-FZ
July
5,
1996
State
Regulation
Field
Genetic
Engineering
Activities"
require
ethical
examination
order
comply
with
safety
clinical
trials
gene
diagnostic
methods,
well
other
cases.
4.
Medical
organizations
shall
ensure
compliance
rules
professional
ethics
terms
data
confidentiality,
carry
out
their
depersonalization,
notify
patients
writing
about
regime
and,
result,
provide
guarantees
patients,
relatives.
Lex genetica.,
Год журнала:
2024,
Номер
3(2), С. 54 - 73
Опубликована: Авг. 3, 2024
The
legal
regulation
of
relations
concerning
genomic
information
has
undergone
several
transformations
over
recent
years
in
the
Russian
Federation.
Not
only
is
a
universal
approach
towards
such
civil
law,
including
regarding
possibility
sharing
information,
currently
lacking,
concept
remains
poorly
defined
as
an
object
rights.
A
special
regime
for
big
data
capable
processing
with
help
artificial
intelligence
technologies
also
lacking
current
legislation
Considering
great
potential
value
all
humanity,
and
need
data,
proposed
balanced
will
ensure
proper
protection
personal
non-propertyand
other
Thus,
present
work
sets
out
to
identify
specific
features
sharing.
When
determining
balance
between
public
private
interests
can
be
ensured
by
maintaining
non-property
rights,
ensuring
confidentiality
obtaining
consent
dissemination
accordance
law.
However,
order
do
this,
it
necessary
distinguish
conceptually
about
particular
person
on
basis
which
obtained.
status
human
biological
material
should
determined
along
regulations
its
obtain
at
same
time
defining
regulating
biobanks
stored.
Lex genetica.,
Год журнала:
2024,
Номер
3(3), С. 93 - 106
Опубликована: Окт. 25, 2024
Genetic
and
genomic
information
has
enormous
potential.
In
the
near
future;
such
may
be
determined
as
an
integral
part
of
world
order
in
general;
legal
particular.
The
author
examines
modern
theory
relations;
applying
it
to
relations
regarding
genetic
methods
protecting
information.
mechanism
civil
law
protection
identify
those
means
by
which
is
possible
ensure
research
aimed
at
studying
illustrating
ensuring
Siberian Law Review,
Год журнала:
2024,
Номер
21(4), С. 579 - 595
Опубликована: Ноя. 20, 2024
In
today’s
context
of
growing
volumes
personal
data
and
the
increasing
number
legally
significant
actions
that
can
be
conducted
with
access
to
such
data,
importance
legal
protection
for
has
become
more
pronounced.
This
paper
aims
examine
nature
right
data.
Based
on
an
analysis
Russian
legislation,
Author
concludes
there
exists
unnamed,
independent
subjective
right,
which
serves
enable
subject
control
define
conditions
processing,
as
well
protect
from
unauthorized
use.
The
study
critically
evaluates
current
scientific
debate
regarding
this
right.
Three
primary
approaches
in
academic
discourse
autonomy
are
identified,
tentatively
categorized
“ignoring”,
“denying”,
“recognizing”
approaches.
notes
lack
a
uniform
approach
naming
suggests
designating
it
“the
inviolability
data”.
is
characterized
independent,
subjective,
non-property,
absolute
civil
further
explores
under
arises
terminates.
Specifically,
originates
at
birth
individual
terminates
when
purpose
processing
ceases,
typically
upon
death
whose
was
processed.
need
succession
justified
allow
heirs
ensure
testator’s
if
its
continues
posthumously.
distinguishing
between
privacy,
argues
these
distinct
rights.
They
interconnected
only
theoretical
frameworks
use
protective
measures
one
other
infringed.
A
trend
judicial
practice
been
where
courts
recognize
existence
Although
not
explicitly
named,
nonetheless
afforded
protection.
Lex Russica,
Год журнала:
2024,
Номер
77(12), С. 84 - 93
Опубликована: Дек. 21, 2024
The
paper
attempts
to
analyze
international
legal
acts
that
express
approaches
and
principles
aimed
at
regulating
the
handling
of
genetic
genomic
data,
including
family
data.
At
level,
processing
data
is
regulated
as
part
a
more
general
management
regulation.
Meanwhile,
there
are
documents
devoted
directly
analyzes
specific
documents,
in
relation
relevant
level
Russian
Federation.
Based
on
results
study,
conclusions
drawn
related
possibility
using
domestic
legislation.
It
noted
most
regulation
expressed
norms
«soft
law»,
which
quite
consistent
with
stage
development
considered
social
relations.
All
finding
balance
interests
between
different
groups
and,
any
case,
public
private
(individual)
interests.
Rational
use
formulated
organizations,
taking
into
account
Federation,
will
make
it
possible
develop
proposals
for
improving
this
area.
Juridical Journal of Samara University,
Год журнала:
2021,
Номер
7(1), С. 57 - 62
Опубликована: Июль 7, 2021
In
the
article
on
basis
of
a
critical
analysis
existing
positions
in
doctrine
concept
biobank
as
an
object
rights
was
formulated.
At
same
time,
it
is
proposed
to
distinguish
between
organizations
charge
biobanks
and
collections
themselves.
It
concluded
that
complex
object,
which
differentiated
unity,
since
its
elements,
one
hand,
are
autonomous,
but
other
interconnected
interdependent.
emphasized
formation
single
legal
regime
complicated
by
substantive
heterogeneity
this
diversity
elements.
Taking
into
account
experience
European
States
field
regulation
scientific
views,
idea
publishing
basic
special
law
biobanks,
should
establish
their
rules
for
under
jurisdiction
supported.
The
need
working
with
provide
unprecedented
protection
proven.
structure
has
been
determined
most
important
component
group
obtaining
consent
holder
further
use
data
derived
from
them
identified.
feasibility
introducing
more
diverse
forms
circulation
contents
justified.