Population-hased genomies and the leelandie
HealthDatabase
Two steps in the same direction
KRISTJANERLENDSSONMD,
VP of clinical coliabaration Decode Genetics
Decode Genetics is a population-hased genomics
company that was founded in 1995 in Reykjavik,
Iceland. The company has set out to conduct re–
search into the inherited eauses of common
diseases and aims, tagether with pharmaceutical
campanies and other healthcare institutions, to
utilize its research to develop new methods for
identifying, treating and preventing diseases. In
doing so, Decode has created numerous
apportunities for highly educatedyoung scientists,
thus generating new possibilities for them to re–
tum to leelandwith their scientific experience and
know-how. The company has generated 290 jobs
in this new industry in Iceland.
The emphasis on population-hased genomics
and later the expansion of information technology
for the progress ofhealthcare and research as weil
as its Iinking to genetic research and genealogy,
has generated a new era in the leelandie health
science sector. It has opened up new research
possibilities and putting leelandie scientist on the
forefront in the discussion about ethics ofscientific
research and numerous aspects of data protection
in the increasinguseofcomputers inmedicine and
science in general.
Genomics and the leelandie Population
Most common diseases have agenetic component,
often combined with certain environmental
influence. leeland has a relatively homogeneous
population and has preserveddetailedgenealogica!
records dating back to the ninth century. lt has pro–
ven very difficult to find causative genes for com–
mon diseases inheterogeneous populations, but an
isolated population, one containing minimal
diversity, with extensive genealogical and medi–
cal information is an ideal system to discover new
disease genes. Geographically isolated until the
1900's, the entire leelandie population has
descended from a small number of individuals.
Data packets
Original
patient record
JOnGunnarsson
10:30.03.33-4444
Gagnaskj6111
Cause of admission:
A12..
Text: Jon has been
uhder stress and has had
problems regarding ...
Diagnosis:
ICD10: 6453.•
Operations: E 33 .
L.aboratory:
B
12..
Treatment: Z 11
Outcome: VF 2..
--
As
sent from
healthcare
- snuti
m
l
on
ID:$%72hhh
X$%&/
Textnot
u
sed
qpkjd/&sfJ
Ip&nvmxcv
ksdfjlsfW=(f
Y4Qönl>:hw;
>Z1!oop%9df
After encryption by
Data Proteetian
c
ommiSSIOn
ID:EYJAL2
X$%&/
l~
qpkjd/&sfJ
Ip&nvmxcv
ksdfjlsfW=(f
Y4Qönl>:hw;
>Z1!oop%9df
Figure l . Overview over The Decode genomic research approach (see text).
86
As stored in
database
ID:ZPTFQDHl
A1233
ICD10: B453..
E 33 ...
B
12..
z
11..
VF 2...
Kli11isk Kemi
i
Norden 4. 1999
