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Charmaine
Royal,
Ph.D.,Director |
With
the ever-increasing
demand for more
deliberate attention
to the non-scientific
impacts of human
genome/genetics
research, particularly
for diverse, underrepresented,
and traditionally
marginalized groups,
the GenEthics
unit is charged
with the tremendous
challenge of assessing
and addressing
relevant ethical,
legal, social,
and psychosocial
issues emerging
from the genomic
revolution.
It has become
more and more
evident that without
adequate and appropriate
integration of
various contexts
(i.e. historical,
social, political,
cultural, and
economic effects),
efforts (including
human genome research)
to eliminate existing
health disparities
and promote health
will be futile.
Accordingly, this
unit seeks to
incorporate the
unique as well
as the shared
experiences of
African Americans
and other African
Diaspora populations
into the implementation
and application
of human genome
research, endeavoring
to minimize potential
harm and maximize
capacity of these
groups to partake
of the expected
benefits of improved
diagnosis, treatment,
and prevention
of disease.
An equally important
anticipated outcome
is enhanced overall
well-being of
these populations
and humanity as
a whole, facilitated
by greater appreciation
for the genotypic,
phenotypic, and
cultural diversity
that is inherently
characteristic
of humankind.
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To
optimize
participation
of
African
Americans
and
other
African
Diaspora
populations
in
the
generation,
interpretation,
application,
and
utilization
of
human
genetics/genome
information. |
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Operational
Objectives
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The
overriding
theme/approach
for
the
GenEthics
unit
is
“community
partnership”.
As
embodied
in
the
GenEthics
logo,
engagement
of
and
partnership
with
the
communities
served
by
the
NHGC
are
integral
to
the
functioning
of
each
of
the
three
sections
of
the
unit
(Research,
Education,
and
Policy)
and
the
Center
as
a
whole.
The
following
operational
objectives
of
the
GenEthics
Unit
serve
to
guide
its
research,
education,
and
policy
activities.
1.
Design
and
implement
research
projects
that
identify
and
examine
the
ethical,
legal,
societal,
and
psychosocial
implications
of
human
genetics/genome
research
for
peoples
of
the
African
Diaspora.
2.
Develop
culturally
appropriate
educational
materials/curricula/programs
related
to
the
biological,
ethical,
legal,
and
social
aspects
of
human
genome
research,
for
both
the
professional
and
public
sectors
of
the
local
and
international
constituencies
of
the
NHGC.
3.
Facilitate
the
development
of
local
and
international
public
policies
that
promote
equity,
among
individuals
and
communities,
in
the
distribution
of
benefits
and
risks
associated
with
human
genome
research.
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Community
Partnership
Program
The
Community
Partnership
Program
(CPP)
is
the
pulse
of
the
Unit
and
Center,
facilitating
the
relationship
between
those
entities
and
the
communities
which
are
the
foci
of
their
efforts. The
CPP
has
been
implemented
to
establish
and
maintain
rapport
with
key
community
leaders
and
organizations
in
an
effort
to
partner
with
them
and
their
constituents
in
the
undertakings
of
the
NHGC.
The
following
are
some
of
the
CPP
activities.
What
is
the
CPP?
Community
Engagement
Benefits
of
Community
Engagement
Community
Partners
The
Community
Advisory
Board
(CAB)
Issues
Raised
during
Community
Forums
Reflections
from
Community
Forums
Information
for
a
presentation
on
genetic
research
Contact
Information
Go
to
Community
Partnership
Program
Page
Go
to
Activities
Details
Research
The
establishment
of
a
rigorous
GenEthics
research
program
at
the
NHGC
is
paramount
to
the
accomplishment
of
our
goal,
and
to
the
overall
goal
of
the
NHGC.
The
GenEthics
research
is
intended
to
complement
molecular
and
epidemiological
research
projects
being
conducted
in
other
NHGC
units,
as
well
as
venture
into
other
areas.
There
are
several
ongoing
research
projects
in
GenEthics
including:
.
Center
for
Excellence
in
ELSI
Research
(CEER)
Attitudes
of
African
Americans
Toward
Genetic
Testing
for
Prostate
Cancer
Risk
Risk
Evaluation
and
Education
for
Alzheimer’s
Disease
(REVEAL
II)
Attitudes
toward
DNA
Testing
for
African
Ancestry
Engaging
African
Communities
in
the
HapMap
Project
Local
community
surveys
Go
to
Research
Details
Education
It
is
becoming
increasingly
clear
that
the
full
potential
of
the
rapid
advances
in
human
genetics
will
not
be
realized
unless
each
segment
of
society
becomes
“genetically
literate”.
As
such,
and
in
accordance
with
the
stated
mission
of
the
NHGC,
“To.
.
.
.
.
teach
the
knowledge
about
DNA
sequence
variation
and
environment
interaction
.
.
.
.
.”
,
education
is
one
of
our
most
critical
responsibilities.
As
indicated
below,
the
education
program
targets
various
groups,
including
students,
faculty,
and
the
general
public.
Graduate
Course
[“Ethical,
Legal,
and
Social
Issues
(ELSI)
in
Human
Genetics”]
Expanding
ELSI
Pedagogy
in
Undergraduate
Education
(Faculty
Summer
Institute)
Local
Community
Partnership
Program
(CPP)
activities
Jackson
Heart
Study(JHS)
Go
to
Education
Details
Policy
A
core
purpose
of
the
NHGC
is
for
diverse
groups,
particularly
populations
of
the
African
Diaspora,
to
have
a
role
in
informing
local
and
international
policies
regarding
research,
healthcare,
and
society,
particularly
as
they
relate
to
human
genetics.
Active
involvement
in
the
process
is
the
most
effective
and
practical
means
by
which
members
of
these
populations
may
partake
of
the
anticipated
benefits,
and
be
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