In 1989, the Havasupai Tribe asked an anthropologist at Arizona State University for help in figuring out whether genetics might be contributing to its high rate of diabetes mellitus. The anthropologist recruited a geneticist (who was also interested in schizophrenia) to lead the study. The rest of the story is disputed. Was only diabetes research mentioned when members of the tribe allowed ASU investigators to collect blood samples or did the Havasupai understand that other questions could be studied when they provided consent for research on “the causes of behavioral/medical disorders”? The researchers determined that the genetic link to diabetes found in another tribe did not exist among the Havasupai, but other ASU researchers who used the samples published papers about alcoholism, mental illness and the tribe’s migration from Asia (thus contradicting the tribe’s core beliefs about its origins). After seven years of litigation, the suit brought by the tribe in 2003 was finally settled with ASU apologizing, paying $700,000 to 41 of the Havasupai, returning the blood specimens to the tribe, and agreeing to prevent any further research based on information derived from the materials. This forum will explore such issues as: What was the meaning of the consent that the Havasupai provided? What should subjects be told about future research with anonymized samples? What can we tell them? What are the interests of the tribe (distinct from its members’ interests) and how can and should they be protected? What are the implications of the ASU-Havasupai case for physician-investigators conducting community-based research in a diverse urban setting like Los Angeles?

1. The
Havasupai
Tribe
versus
Arizona
State
University
Gene7cs,
Consent,
and
Communi7es
Donna
Spruijt-­‐Metz,
PhD
MFA
Director,
USC
mHealth
Collaboratory
Center
for
Economic
and
Social
Research
Associate
Professor
Preven=ve
Medicine
and
Psychology
Director,
Responsible
Conduct
in
Research,
USC
Keck
School
of
Medicine
dmetz@usc.edu
USC
CTSI
Ethics
Forum
September
10
2014

2. The
Havasupai
people
(people
of
the
blue-­‐
green
waters)
have
lived
in
the
Grand
Canyon
for
at
least
the
past
800
years

3. • ~
650
people
• In
1989,
members
approached
ASU
to
learn
why
the
incidence
of
diabetes
within
their
community
was
increasing.
• Therese
Markow,
a
genePcist
at
ASU,
took
on
the
study.
• ~
100
tribal
members
signed
a
broad
consent
document
to
“study
the
causes
of
behavioral/medical
disorders”
• Most
of
them
had
not
completed
high
school,
and,
for
many,
English
was
a
second
language
• All
believed
that
they
were
donaPng
blood
solely
for
the
purpose
of
looking
for
a
link
to
diabetes
to
improve
the
health
in
their
community
• The
genePc
link
to
diabetes
ASU
was
looking
for
was
not
found
• Research
conPnued
into
medical
disorders
without
seeking
addiPonal
consent
• Other
ASU
researchers
also
uPlized
the
Havasupai
samples
for
their
work
and
published
papers
about
inbreeding,
alcoholism,
and
the
origin
and
migraPon
of
the
tribe
from
Asia.

4. Havasupai
Indian
Tribe
Journey
• hXp://www.nyPmes.com/video/2010/04/21/
us/1247467672743/blood-­‐journey.html

5. What
does
this
teach
us?
• What
was
the
meaning
of
the
consent
that
the
Havasupai
provided?
• What’s
the
harm—when
genePc
data
are
derived
from
samples
that
have
been
voluntarily
provided
to
researchers
for
another
purpose?
• What
are
the
interests
of
the
tribe
(disPnct
from
its
members’
interests)
– how
can
we
solicit
feedback
so
that
we
can
know
them?
– how
can
and
should
they
be
protected?
• What
kinds
of
harms
tend
to
be
under-­‐emphasized
in
our
current
IRB
review?
• What
should
subjects
be
told
about
future
research
with
anonymized
samples?
• What
are
the
implicaPons
of
the
ASU-­‐Havasupai
case
for
scienPsts
conducPng
community-­‐based
research
in
a
diverse
urban
secng
like
Los
Angeles?

6. hXp://www.naPveresearchnetwork.org/
links.htm

7. hXp://ncaiprc.org/