will,when fully operational, contain more informa–
tion than is now commonpractice in present dataha–
ses but with the progress of electronic medical
recordswe'
II
see the progress towards such dataha–
ses facilitated elsewhere as weil.
The leelandieRealtheare database in connection
with Decode's genealogy database and molecular
genetic information, will represent a powerful in–
strument to discover new knowledge about human
disease and its management. Coupled with
genealogical and genetic data, the genetic pattemof
variousdiseases can beelucidated fu1ther, asweil as
the relationship between genetics and
phrnmacological response.
The use of the IHD will give the apportunities
i.a. to:
• Assist healthcare providers in tailoring the
treatmentof individuals according to thegeneticbasis
ofdisease and treatment response.
• Enable healthcare providers and payers
to
analyze and single out the most cost-effective
treatment for various diseas and provide the highest
quality treatment.
•Constructmodels for developing diseasemana–
gement programs.
• Provide pharmaceutical researchers with a
chance to use both a macroscopic and microscopic
approach (i.e. healthcrn·e data with genetic data) to
understand the origins ofcomplex diseases and find
more specific drug targets.
To build a useful databankwidespread coope-ra–
tion is needed. Not only from the people and the
customers of the healthcare system but also from
healthcare workers and directors and boards of
healthcare institutions. Confidence in the project and
its executioners by thepeopleneed tobe strengthened
and cooperation from healthcare workers must be
secured. With the introductionofnewmedical record
systems theoppmtunity to standardize recordkeeping
wiii further emerge in Iee!and. Achange ofworking
habits canon!ybeexpected to takeplace if thework–
erswiii gain something from the change in theirdaily
workor itwiii givethemnew research opportunities.
This work will therefore only be successful if both
paJties benefit from cooperation. The possibilities
for that to happen are in fact good but an extensive
introduction and later contract talks should be
forthcoming.
There has been someworries that scientific free-
Klinisk Kemi
i
Norden4. /999
dom will be compromised be the IHD. On the
contrary the IHD will in fact generate increased
possibilities for scientists at the cooperating institu–
tions to conduct resern·ch. Not only will the new
record keeping systems facilitate in-house research
but the addition of the IHD will also be for their
benefit. Data privacywill also be greatly enhanced
by replacing research conducted by chart review
done on paper records with research based on data
from electronic medical records.
Decode Genetics has brought about for the
leelandie healthcare system and the leelandie sci–
ence world a new era of progress and new ideas. It
has already proven its point about genetic research
in leeland. The plans on IHD, a health informatics
based research, areweil on thewaywith the goal to
help analyze disease patterns, such as the interplay
between genes and environment, treatment and
outcome.
It is quite natural that such major changes in a
ce1tain part ofa societywillnot bemet with univer–
sal applause. Independent polls have though shown
that over 80% of the nation support the genetic re–
search. The participation is evengreater, suggesting
an even more widespread support by patients and
their relatives, peoplewho really know the effect of
disease and iii health. In similar polis,
Il%
of the
nation claim that theywill opt out from the IHD. So
far only about 6% have done so, even after a full
yearofadvertisingand activist groups urging people
to opt out.
Thediscussions that have sternmed from the IHD
about ethics in science andpatients rights have been
extensiveandwiii benefit not only leelandiepatients
but will have and have already had repercussions
internationally. They have been focused on the
importance of human rights but also on the need to
do medical research to ensure progress in science
andhealthcare. Thebalancebetween those twoneeds
to be struck.
Decode Genetics is therefore pleased with the
support its research and future plans have received
from the leelandienation. Thecompany is
al
soproud
of the discussion its work andplans have generated.
Not manymatters ofsuch complexity and sowidely
debated have gained between 80 - 90% support
within a whole nation. That fact is reassuring
during , at times, heated but very useful , debate.
For further information see:
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