In 1999 the Icelandic parliament passed an act to found a national gene bank, a large scale genetic database composed of blood samples for each of its 275,000 citizens. DNA remote from this blood was to be used as the basic for genetic studies. However lately, privacy concerns have produced Iceland to rethink the project.
Iceland was the first country to create a gene bank, followed by Estonia as well as then Tonga. Iceland is sole in that it has a fairly homogeneous population in which little immigration occurs as well as several natural disasters have contributed to similarities in the population's gene pool. Furthermore the country provides national medical care for its citizens consequently it has extensive medical records dating back to 1915. Furthermore, genealogies of numerous Icelandic families are available for as far back as 500 years.
Concerns arose when Iceland's parliament obvious to sell exclusive rights to all its genetic data as well as medical and genealogical records to a U.S. company, deCODE Genetics, for the purpose of gene discovery. In turn, deCODE promised to deliver any treatments and diagnostic tests developed from this research free of charge to Icelanders for the life of the patient. In a very short time deCODE signed a $200 million contract with Hoffman LaRocbe to search for numerous common human genetic diseases. Up to now, several genes have been positively identifies including a gene linked to osteoarthritis.
Opponents of this agreement felt that it allowable a scientific monopoly on a veritable gold mine of genetic information. However even more seriously, they protested to the gene database on the basis of patient's rights regarding informed consent and genetic privacy. In the United States, you should give permission to have your samples used for research. In Iceland everyone would be included in the genetic research unless they "opted out," although the data were to be encoded so that no ex could be linked to a particular person. Even though researchers are usually allowed access to medical nature of this data bank as well as its for -profit research caused some people to feel that individual consent should have been required beforehand the medical records were released to deCODE. In April 2004, Iceland's Supreme Court ruled that "the 1998 the law governing the formation of the database is unconstitutional for the reason that it fails to protect personal privacy adequately."
What concerns must the Icelandic citizens now be discussing with their parliament?