Uppgávur hjá Ílegusavninum

Ílegusavnið var formliga stovnsett tann 1. juni 2006. Ílegusavnið virkar við heimild í Ll. nr. 62 frá 17. juni 2005 um gransking í mannaílegum (Ílegulógin) – sí nærri um lógina undir rættarreglur.

Sbrt. § 3, stk. 1 er endamálið hjá Ílegusavninum at skipa, byggja upp og fyrisita Vevnaðarskránna, Diagnosuskránna og Ættarbandsskránna og viðgera umsóknir um loyvi til at granska í upplýsingunum í skráunum, herundir at krevja gjald fyri tær veitingar og upplýsingar, sum Ílegusavnið gevur atgongd til. Tískil er Ílegusavnið í høvuðsheitum ikki ein granskingarstovnur, men heldur ein samskipandi eind innan heilsuverkið, ið hevur sum uppgávu at fáa uppbygt nevndu skráir, gera møguligar forkanningar og annars at viðgera umsóknir til at granska í upplýsingunum.

 

 

 

Starvsfólk
Guðrið Andorsdóttir, stjóri
T-post: gudrid@biobank.gov.fo
Telefon: +298 30 47 00
Beinleiðis: +298 30 47 01
Fartelefon: +298 59 10 20
Fax: +298 30 47 10

Hildigunn Thomsen, skrivari/samskipari
T-post: hildigunn@biobank.gov.fo
Beinleiðis: +298 30 47 00
Fartelefon: +298 23 30 52

Marjun Olsson, skrivstovufólk
T-post: marol@biobank.fo
Beinleiðis: +298 30 47 07

 

Verkætlanin FarGen

Starvsfólk

Fíggjarviðurskifti
Játtanin hjá Ílegusavninum í 2015 er umleið 1,2 mio.kr. Haraftrat umsitur Ílegusavnið játtanina til verkætlanina Fargen uppá 400.000 kr.

Meginreglan er at verkætlanir, ið innganga avtalu við Ílegusavnið, skulu rinda Ílegusavninum fyri tænasturnar, ið verða veittar. Ílegusavnið rindar so aftur kliniskum ábyrgdarhavum, starvsstovuni á Landssjúkrahúsinum v.m. fyri tænasturnar, ið tey veita. Um verkætlanir viðføra vitan, ið onkursvegna kann handilsgerast, verður í sambandi við verkætlanir tryggjað, at føroyska heilsuverkið eigur rætt til ein part av møguligum ágóða/virði.

V-tal: 561061
GLN/EAN-nummar: 5797100000898

Rættarreglur

Ílegulógin
Ll. nr. 62 frá 17. mai 2005 um gransking í mannaílegum (Ílegulógin)
Kunngerð um gjøld fyri veitingar og upplýsingar frá Ílegusavninum: Kunngerð nr. 124/2014

Persónsupplýsingarlógin
Ll. nr. 73 frá 08.05.2001 um viðgerð av persónsupplýsingum við seinni broytingum

Lóg um sjúklingarættindi
Anordning nr. 827 frá 30.09.2002 om ikrafttræden for Færøerne af lov om patienters retsstilling, við seinni broytingum.

Vísindasiðsemislógin
Nýggja lógin: Anordning nr. 961 frá 15. juli 2013. Anordning om ikrafttræden for Færøerne af lov om videnskabsetisk behandling af sundhedsvidenskabelige forskningsprojekter.

Gamla lógin
Anordning nr. 862 af 30. november 1999 om et videnskabsetisk komitésystem og behandling af biomedicinske forskningsprojekter

Trygdarpolitikkur

About the Genetic Biobank

In June 2006 the Genetic Biobank (Ílegusavnið) started its efforts to develop the infrastructure to establish and maintain an active biobank, and to utilize such a resource in conjunction with medical and genealogical data to support research projects aimed at discovering the relationship between genetic background, environmental influences and disease onset and progression. The current population of the Faroe is approximately 49.000. The population these last 200 years is estimated to be approximately 180.000.

The Genetic Biobank is a governmental institution under the Ministry of Health www.hmr.fo, with a mandate to organize, develop and administer a Tissue Registry (biobank), a Diagnosis Registry and a Genealogy Registry and to process applications for permission to access and study the information contained in the said registries. A nationwide genealogy registry covering several centuries (~ 4 centuries) is being constructed and will be available in 2011/2012 but is currently available in a beta version. The Genetic Biobank is the official institution authorized to conduct genetic research on human tissue from individuals registered in the Faroes. All organizations wishing to use Faroese samples and diagnostic information can do so by entering a contractual research agreement with the Genetic Biobank. The first pilot projects and preparatory projects started in the autum 2007.

In connection with each specific project the Genetic Biobank will appoint a responsible clinician within the National Health Care system, with the right, according to law, to obtain all relevant personal data and diagnoses from all branches within the National Health Care System (diagnostic data available over the last 100 years), including the National Pharmacy (extensive register over prescribed drugs, stored electronically since the early eighties), GP’s (out-patient records) and specialist records (both out-patient and hospitalised). The informatics infrastructure in the Healthcare Care System (GP’s and Hospitals), employing electronic registration since the early 1990’s, have these last years been implementing the COSMIC platform and are now in the forefront using electronic patient system. In addition to collecting fresh tissue samples from subjects enrolled in specific projects, there are archival tissues available from an estimated 35,000 Faroese in the form of Guthrie cards and samples in paraffin blocks from an estimated 30,000 people and 20.000 EDTA Cryo-samples.

Contact
Mrs. Guðrið Andorsdóttir, director
e-mail: gudrid@biobank.gov.fo
Phone: +298 30 47 00
Direct line: +298 30 47 01
Mobile phone: +298 59 10 20
Facsimile: +298 30 47 05

Hildigunn Thomsen, secretary/coordinator
e-mail: hildigunn@biobank.gov.fo
Phone: +298 30 47 00
Mobile phone: +298 23 30 52

Marjun Olsson, office assistant
T-post: marol@biobank.fo
Beinleiðis: +298 30 47 07

The FarGen Project

Staff

Legal framework