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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
|
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
spared
from
many
of
the
potential
harms
from
advances
in
genetics/genomics.
Some
of
our
policy-related
projects
include:
Activities
Details
Community
Partnership
Program
Please
click
above
link
for
more
information
on
the
CPP.
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)
Dr.
Royal
has
recently
received
funding
from
the
National
Human
Genome
Research
Institute
to
plan
for
the
establishment
of
a
Center
for
Excellence
in
ELSI
Research
(CEER)
at
Howard
University.
Additional
information
on
the
proposed
“Center
on
Genomics
and
Social
Identity
in
the
African
Diaspora”
is
forthcoming.
Please
visit
our
web
site
click
on
http://www.howard.edu/cee
Attitudes
of
African
Americans
Toward
Genetic
Testing
for
Prostate
Cancer
Risk
This
project
is
an
outgrowth
of
the
African
American
Hereditary
Prostate
Cancer
(AAHPC)
Study,
one
of
the
two
initial
core
projects
of
the
NHGC.
It
is
an
effort
to
delineate
factors
associated
with
the
willingness
of
individuals
to
participate
in
genetic
testing
for
prostate
cancer.
The
study
builds
on
the
scientific
infrastructure
of
the
African
American
Hereditary
Prostate
Cancer
(AAHPC)
Study
(a
national
collaborative
project
aimed
at
identifying
genes
involved
in
prostate
cancer
in
African
American
men)
in
an
effort
to
increase
understanding
of
the
psychosocial,
cultural,
and
ethical
dimensions
of
prospective
genetic
testing
for
prostate
cancer
risk,
as
well
as
to
learn
about
participants’
experiences
in
the
AAHPC
study.
This
study
employs
both
quantitative
(electronic
survey)
and
qualitative
(in-depth
interviews)
research
methods,
intended
to
not
only
identify
attitudes,
but
also
provide
some
insight
into
their
determinants.
The
primary
Specific
Aims
of
this
study
are
to:
1)
assess
the
relationship
of
personal,
socio-economic,
and
religious
factors
to
attitudes
toward
genetic
testing
for
prostate
cancer
risk
and
2)
determine
factors
influencing
likelihood
of
uptake
of
genetic
testing
for
prostate
cancer
risk.
The
study
group
consists
of
AAHPC
Study
participants
(and
persons
who
declined
participation)
from
three
of
the
seven
sites
in
the
AAHPC
Study
–
Washington,
DC,
and
Atlanta,
GA,
and
New
York,
NY.
Both
quantitative
and
qualitative
research
methodologies
are
being
employed
in
this
investigation.
Data
is
ascertained
through
a
web-based
survey
and
an
interview
guide
administered
via
telephone
and
in
person,
respectively.
The
primary
goal
is
to
assess
the
attitudes
and
interest
of
members
of
families
participating
in
the
AAHPC
Study
regarding
genetic
testing
for
prostate
cancer
risk.
A
secondary
goal
is
to
assess
their
perspectives
on
the
AAHPC
study
and
their
experiences
with
that
study.
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Risk
Evaluation
and
Education
for
Alzheimer’s
Disease
(REVEAL
II)
Genes
and
other
biological
markers
are
rapidly
being
identified
that
can
provide
susceptibility
risk
estimates
for
the
eventual
development
of
complex
late
onset
diseases.
There
is
some
public
interest
in
obtaining
this
risk
information,
however
given
inadequate
methods
of
prevention
for
many
complex
diseases,
there
are
ethical
concerns
about
introducing
such
genetic
testing
in
a
clinical
setting.
There
is
also
limited
information
on
the
benefits
or
negative
consequences
of
providing
susceptibility
risk
information
that
could
guide
rational
decisions
or
public
policy.
Therefore,
the
Risk
Evaluation
and
Education
for
Alzheimer’s
Disease
(REVEAL
II)
Study
seeks
to
develop
new
guidelines
for
whether
and
how
to
best
use
susceptibility
testing
for
unpreventable,
late
onset
disorders.
REVEAL
II
is
a
collaborative
project
coordinated
by
Boston
University
and
includes
Case
Western
Reserve
University,
Columbia
University,
and
Howard
University.
The
primary
aim
of
the
REVEAL
II
Study
is
to
examine
whether
receiving
risk
assessment
and
APOE
genotyping
disclosure
through
a
Condensed
Education
and
Counseling
Protocol
is
as
safe
and
as
effective
as
receiving
such
information
through
an
Extended
Protocol.
Another
specific
aim
is
to
study
whether
there
are
any
differences
among
groups
who
receive
disclosure
of
APOE
results
and
risk
assessment
with
different
provider
types.
In
the
context
of
the
Condensed
Education
and
Counseling
Protocol
we
will
also
examine
differences
between
a
physician
providing
disclosure
and
a
genetic
counselor
providing
disclosure.
REVEAL
Study
participants
are
followed
for
one
year
to
assess
the
potential
development
of
anxiety
or
depression,
and
to
track
any
decisions
to
alter
employment,
insurance
coverage,
or
health
behaviors.
In
REVEAL
II,
newly
published
data
on
genetic
risk
of
AD
in
African
American
families
will
allow
more
specific
characterizations
of
risk
estimates
for
both
African
Americans
and
European
Americans.
Given
that
African
Americans
are
typically
underrepresented
in
genetic
testing
research
protocols,
one
of
Howard
University’s
major
goals
is
to
increase
the
enrollment
of
African
Americans
into
the
REVEAL
II
Study.
We
expect
that
at
least
one-third
of
the
participants
in
REVEAL
II
will
be
African
American,
allowing
us
to
explore
our
final
aim
of
how
racial
identity
affects
the
desire
to
obtain
genetic
risk
assessment
and
the
impact
of
receiving
it.
The
inclusion
of
viewpoints
from
participants
with
diverse
backgrounds
will
serve
to
inform
responsible
delivery
of
susceptibility
genetic
testing
services
to
various
populations.
To
learn
more
about
the
REVEAL
II
Study
procedures
and
eligibility
requirements,
please
contact
the
Howard
University
study
coordinator
or
visit
the
main
site
for
REVEAL
II.
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Attitudes
toward
DNA
Testing
for
African
Ancestry
This
collaborative
study
with
African
Ancestry,
Inc.
seeks
to
determine
ethical
and
psychosocial
dimensions
of
genetic
testing
for
ancestry
among
African
Americans.
Participants
include
members
of
the
general
population
that
may
or
may
not
be
interested
in
DNA
testing
as
well
as
persons
requesting
such
testing.
The
latter
group
of
participants
completes
one
survey
prior
to
genetic
testing
(pre-test)
and
another
upon
receipt
of
their
test
results
(post-test),
while
general
population
participants
complete
a
single
survey.
The
surveys
comprise
both
fixed
choice
and
open-ended
items.
Engaging
African
Communities
in
the
HapMap
Project
The
NHGC
is
participating
in
the
International
Human
Haplotype
Map
(HapMap)
Project,
aimed
at
characterizing
patterns
of
common
variation
across
various
populations
or
geographic
regions
as
a
means
of
developing
a
more
efficient
tool
(haplotype
map)
for
mapping
genes
underlying
susceptibility
to
common
disease.
The
overall
project
includes
the
engagement
of
a
number
of
communities/populations
around
the
world,
collection
of
samples
from
members
of
these
populations,
genotyping
of
the
samples,
and
analysis
of
the
resulting
data.
The
NHGC
has
been
leading
the
effort
to
engage
communities
in
west
(Nigeria),
east
(Kenya),
and
southern
Africa
(South
Africa)
and
to
obtain
appropriate
approval
and
consent
for
participation
in
the
HapMap
Project.
Community
engagement
involves
several
activities
such
as
surveys,
town
meetings,
focus
groups,
and
in-depth
interviews
which
combine
to
create
a
process
for
considering
the
risks,
benefits,
and
relevance
of
the
development
of
a
haplotype
map
of
the
human
genome.
Community
engagement
and
sample
collection
are
proceeding
at
the
sites.
Local
community
surveys
Surveys
are
being
conducted
with
attendees
at
the
above-mentioned
local
community
forums
as
well
as
other
community
members
to
assess
knowledge/awareness
of
genetics
and
attitudes
toward
various
aspects
of
genetic
research
and
practice.
top
of
page
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”]
In
Fall
2002,
Dr.
Royal
initiated
this
interdisciplinary
ELSI
course
(offered
through
the
Graduate
School)
to
engage
students
in
an
integrated
analysis
of
the
ethical,
legal,
and
social
implications
(ELSI)
of
human
genetics/genome
research
and
practice.
The
course
is
a
requirement
for
all
students
in
the
Department
of
Genetics
and
Human
Genetics,
and
is
available
as
an
elective
for
graduate
and
upper
level
undergraduate
students
in
all
other
departments/schools
such
as
Biology,
Philosophy,
Psychology,
Sociology,
Divinity,
Law,
and
Political
Science.
This
is
a
three
credit
hour
advanced
course,
offered
each
Fall
semester,
with
no
specific
prerequisite
course.
The
format
of
the
course
is
a
combination
of
lectures
by
Howard
University
faculty
and
invited
guests,
short
films,
case
studies,
student
presentations,
practicum,
and
other
forms
of
pedagogy.
Expanding
ELSI
Pedagogy
in
Undergraduate
Education
(Faculty
Summer
Institute)
This
project
is
a
collaboration
between
Dartmouth
College
and
Howard
University
to
train
university/college
faculty
to
teach
ELSI
issues
to
undergraduates.
For
the
past
two
summers,
faculty
from
various
institutions
across
the
country
have
been
selected
to
participate
in
a
week-long
Faculty
Summer
Institute
(FSI)
at
Dartmouth
or
Howard,
where
faculty
from
both
institutions,
along
with
invited
faculty,
conduct
the
training
sessions.
It
is
expected
that
the
FSI
participants
will
return
to
their
institutions
to
develop
ELSI
courses
for
undergraduates.
Local
Community
Partnership
Program
(CPP)
activities
The
CPP
has
created
avenues
for
bi-directional
education
between
the
scientific
and
general
communities.
While
the
faculty
and
staff
of
the
NHGC
have
been
instrumental
in
informing
community
groups
and
members
about
genetics/genomics
and
ELSI
issues,
the
community
has
been
quite
effective
in
enlightening
the
NHGC
about
its
concerns,
fears,
hopes,
and
expectations.
Our
community-based
activities
as
well
as
our
research
have
also
been
informative
for
educational
materials
that
are
currently
being
developed.
It
is
anticipated
that
the
planned
ongoing
community
engagement
will
provide
even
more
opportunity
for
both
formal
and
informal
education
of
all
parties
involved.
Jackson
Heart
Study(JHS)
The
NHGC
is
a
collaborator
on
the
JHS,
based
in
Jackson,
MS
to
provide
expertise
on
and
assistance
with
the
genetics
component
of
the
study.
In
addition
to
our
involvement
in
the
molecular
genetics
and
genetic
epidemiology
aspects
of
the
project,
we
have
participated
in
the
development
of
the
genetics
education
program
which
includes
community
forums;
brochure
development;
staff
training;
faculty
workshops
and
seminars;
healthcare
provider
seminars
and
conferences;
and
undergraduate
training.
top
of
page
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
spared
from
many
of
the
potential
harms
from
advances
in
genetics/genomics.
Some
of
our
policy-related
projects
include:
Developing
the
Five-year
Policy
Agenda
for
the
NHGC
This
grant
from
the
Harris
Foundation
has
been
instrumental
in
jump-starting
the
policy
arm
of
the
GenEthics
Unit.
The
funding
facilitated
an
assessment
of
current
genetics
policy
to
help
identify
gaps
and
potential
areas
of
focus
for
the
NHGC.
In
line
with
the
mission
and
activities
of
the
NHGC,
one
of
the
major
emerging
areas
for
policy
development
through
the
NHGC
is,
‘race,
genetics,
and
health’.
Human
Genome
Variation
and
“Race”
Series
In
May
2003,
the
NHGC
convened
the
first
in
a
series
of
think
tank
sessions
on
the
conceptualization
of
genetic
variation
as
race.
The
inaugural
meeting
entitled,
Human
Genome
Variation
and
“Race”:
The
State
of
the
Science,
brought
some
of
the
world’s
leading
genome
scientists
in
the
area
of
population
genetics
to
Howard
for
a
one
day
meeting
on
the
subject.
Other
meetings
in
the
series
will
focus
on
the
clinical,
social
and
psychosocial,
legal,
and
related
policy
implications.
Funding
for
the
“State
of
the
Science”
meeting
was
provided
in
part
by
The
Harris
Foundation
and
the
Office
of
Science
of
the
Department
of
Energy.
It
was
important
to
the
NHGC
faculty
that
the
information
presented
at
the
“State
of
the
Science”
meeting
be
published
in
a
credible
scientific
journal
with
wide
distribution
and
a
substantial
readership.
Nature
Genetics
(NG),
a
publication
of
the
Nature
Publishing
Group
(NPG),
has
agreed
to
publish
in
a
special
peer-reviewed
edition,
selected
updated
perspectives
and
commentaries
based
on
the
presentations
made
at
this
meeting.
The
November
1
Nature
Genetics
Special
Issue
will
be
released
to
coincide
with
the
American
Society
of
Human
Genetics
(ASHG)
Meeting
in
Toronto
on
October
26-30.
This
project
has
been
supported
in
part
by
the
Office
of
Science
of
the
Department
of
Energy
and
the
National
Human
Genome
Research
Institute.
Partnership
with
the
Michigan
Center
for
Genomics
and
Public
Health
(MCGPH)
and
the
Joint
Center
for
Political
and
Economic
Studies
(Joint
Center)
Faculty
at
the
NHGC
have
had
a
long
and
trusted
relationship
with
Mr.
Toby
Citrin,
Director
of
the
MCGPH
at
the
University
of
Michigan
and
Principal
Investigator
of
the
“Communities
of
Color
and
Genetics
Policy”
project.
As
a
forerunner
in
the
engagement
of
community
members
in
genetics
policy
development,
Mr.
Citrin
has
been
an
invaluable
resource
in
assisting
us
in
designing
an
effective
public
policy
program.
He
completed
a
mini-sabbatical
last
year
at
Howard
during
which
time
he
facilitated
a
relationship
between
the
NHGC
and
the
Joint
Center
for
Political
and
Economic
Studies.
The
Joint
Center,
based
in
Washington,
DC,
“is
an
international,
nonprofit
institution
that
conducts
research
on
public
policy
issues
of
special
concern
to
black
Americans
and
other
minorities.”
The
Joint
Center
works
with
a
number
of
policy
makers,
coalitions,
advocacy
organizations,
and
media
in
carrying
out
its
mission.
Among
these
are
the
Congressional
Black
Caucus,
National
Conference
of
State
Legislatures,
National
Governor’s
Association,
National
Association
for
the
Advancement
of
Colored
People,
and
the
National
Urban
League.
We
have
initiated
collaborations
with
the
Joint
Center
and
will
continue
our
work
with
them,
the
MCGPH,
and
include
other
entities
as
necessary
to
fully
develop
the
policy
program. |
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