The Western Australian Genome Health Project

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The Western Australian Genome Health
Project Prof Lyle Palmer
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Why do large cohort studies?

• Rising incidence of common diseases
• Causes are unknown - small effects are hard to
  detect
• Explosive growth in new technologies
• Human Genome Project
• Genomics and biomarkers
• New potential to understand causes and treatments
  for common diseases
• Requires large, population-based samples

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An ageing population, a less healthy population
Source WA Department of Health, Finance
Directorate
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An unsustainable health system
Public Health Expenditure History
Source WA Department of Health, Finance
Directorate
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"We have long known that the tendency to sit down
and eat the whole goddamn bag runs in certain
families," said team leader Dr. Edward Alvaro.
"However, until we completed our work, we weren't
sure whether the disposition to cram chips down
your greasy gullet was genetic or whether it was
a behavioral trait learned from one or both
parents.
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Individual and population risks
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Predictive Value of Genetic Testing(WA HIV
Cohort Study Data)
ABC HSR prevalence reduced from 7.3 to 0.4
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Population-based human genome epidemiology (HuGE)
in Western Australia
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WESTERN AUSTRALIAN RECORD LINKAGE PROJECT 2006
Birth Registrations Death Registrations Marriag
e Registrations Hospital Separations Mental
Health Clients Cancer Notifications Midwives
Notifications Emergency Presentations Electoral
Roll
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FAMILY CONNECTIONSGENEALOGICAL DATABASE

• PHASED DEVELOPMENT
• Electronic data
• birth certificates from 1974 (parents) 25,000
  p.a.
• Electronic marriage certificates from 1984
  (parents of both parties) 9,500p.a.
• Electronic death certificates since 1969 (parents
  and children) 10,500 p.a.
• Paper registrations of earlier births, deaths and
  marriages in WA (to 1840).
• Public appeal and approach by letter.

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Ethics and the Use of Identified Data
Changing focus Is it ethical not to use a data
linkage system?
(Trutwein et al. Annals of Epidemiology
200616279-80)
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Core Infrastructure
www.genepi.org.au
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• Contemporary, metropolitan version of Busselton
  Health Study / Framingham HS
• Focus on families
• Focus on health of adults and children
• Sample size 80,000 people.
• 3,500 Measures/person e.g., lifestyle data
  lung, heart, eye function obesity measures
  blood.
• Repeated follow-ups.
• Community outreach ongoing.

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What will we use this resource for?

• Families and general population
• Social, environmental and genetic determinants of
  health and disease
• Genes and environment
• Health economics
• Enabling biotechnology
• Family Health Study as a large national
  initiative
• Prevention, diagnosis, and treatment of illness
• Health promotion
• Intervention
• Empower communities and individuals to take
  responsibility
• Education / e-medicine
• Community engagement and debate

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The Bigger Vision

• Why Western Australia?
• We can do this effectively, quickly and cheaply
• Long history of population-based research.
• Integration of government, hospitals, and
  academia.
• Building upon 30 years of population-based health
  data - the best linked medical databases in the
  world.
• Geographically isolated, outbred population of 2
  million people with relatively low net migration
  rates.
• Historically large families (settlers)
• Population is representative of Australian
  General Population.

The Western Australian Genome Project DNA and
health data from 2 million living Western
Australians
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Community outreach

• 2005
• Survey of all metro GPs
• Community survey of 7,500 Joondalup residents
• Information brochure to every Joondalup household
• Peoples Forum
• 2006
• Major public events
• Schools
• Genes and GPs
• Visiting scholars
• Further surveys

www.jfhs.org.au
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• In the late 20th century, scholars and
  politicians posed a key question What desires
  and needs do you have as an autonomous rights
  bearing person to privacy, liberty and free
  enterprise? Now it is important to ask another
  kind of question What kind of community do you
  want and deserve to live in, and what personal
  interests are you willing to forgo to achieve a
  good and healthy society?
• Prof Lawrence O Gostin
• University of Washington DC

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A Moon Shot
But why, some say, the moon? Why choose this as
our goal? And they may well ask why climb the
highest mountain?... We choose to go to the moon.
We choose to go to the moon in this decade and do
the other things, not because they are easy, but
because they are hard, because that goal will
serve to organize and measure the best of our
energies and skills, because that challenge is
one that we are willing to accept, one we are
unwilling to postpone, and one which we intend to
win... John F Kennedy, 1962
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