Gene Banks Versus Privacy Invasion

In 1999, the Icelandic parliament passed an act to establish a national gene bank, a large-scale genetic database composed of blood samples from each of its 275,000 citizens. DNA isolated from this blood was to be used as the basis for genetic studies. But lately, privacy concerns have caused Iceland to rethink the project.

Iceland was the first country to create a gene bank, followed by Estonia and then Tonga. Iceland is unique in that it has a fairly homogeneous population in which little immigration occurs, and several natural disasters have contributed to similarities in the population’s gene pool. In addition, the country provides national medical care for its citizens, so it has extensive medical records dating back to 1915. Furthermore, genealogies of many Icelandic families are available for as far back as 500 years.

Concerns arose when Iceland’s parliament decided to sell exclusive rights to all its genetic data and medical and genealogical records to a U.S. company, deCODE Genetics, for the purpose of gene discovery. In turn, deCODE promised to provide 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 LaRoche to search for several common human genetic diseases. So far, several genes have been successfully identified, including a gene linked to osteoarthritis.

Opponents of this agreement felt that it allowed a scientific monopoly on a veritable gold mine of genetic information. But even more seriously, they objected to the gene database on the basis of patient’s rights regarding informed consent and genetic privacy. In the United States, you must 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 encrypted so that no sample could be linked to a particular person. Even though researchers are commonly allowed access to medical databases as long as the data cannot be linked to individual patients, the commercial nature of this data bank and its for-profit research caused some people to feel that individual consent should have been required before the medical records were released to deCODE. In April 2004, Iceland’s Supreme Court ruled that “the 1998 law governing the creation of the database is unconstitutional because it fails to protect personal privacy adequately.”

Questions

What is genealogical data? How would these types of records provide information for genetic researchers?
How would medical records be useful to genetic researchers?
What is the population of Iceland? What happens to any population when it is small and isolated from gene flow? Give at least one other example.
What type of stigma, prejudice, or discrimination toward Icelandic people might result if science finds that certain genes or mutations run in their population?
Do you think any for-profit company should have a monopoly or preferred position with regard to genetic databases or medical records? Why or why not?
What concerns should the Icelandic citizens now be discussing with their parliament?
Should individuals be allowed to "opt-out" of genetic records? How can the rights of children or mentally disabled individuals be protected? Should sensitive information concerning inheritance of a genetic disease be on record? How can privacy be protected while still allowing researchers access to complete genetic data?

Assignments

Investigate whether the results of genetic research have ever led to discrimination. Cite some examples.
Form two teams of special-interest groups. The first group, the Corporates, will represent a for-profit corporation that wants to buy large databases in order to discover genetic bases of disease and will have exclusive rights to that information. They will be able to save lives and prevent illnesses by researching genetics and medical records. The company stands to gain a lot from possessing exclusive genetic information about the alterations in DNA sequences that cause certain diseases. The company may develop an early detection system to treat diseases before problems begin.
The second group, the Citizens, will represent the public, who are skeptical of the promise of genetic research conducted in this manner and suspect that the business of gene information could lead to negative consequences. They are especially concerned about genetic privacy and discrimination by employers and insurance companies.
Since legislation is being discussed about these concerns, conduct a debate in front of the House of Representatives to present each of your cases. You may bring in "consultants" from medical, legal, business, and financial fields, the behavioral sciences, and genome research to lend support for your case.

References

Abbott, A. 2004. Icelandic database shelved as court judges privacy in peril. Nature 429(6988):188.

Annas, George J. 2000. Rules for research on human genetic variation--lessons from Iceland. The New England Journal of Medicine. Vol. 342 (24):1830-1833.

Billings, Paul R. 1999. Iceland, blood and science. American Scientist. May-June, pp. 199-200.

Special Report. 2000. The Business of the Human Genome. Scientific American. July, pp. 48-69.

The Chipping Forecast. 1999. A special supplement to Nature Genetics. Vol. 21 (1): January.

http://www.decodegenetics.com/

http://www.cnn.com/HEALTH/bioethics/9902/iceland.dna/template.html

Icelandic DNA project hit by privacy storm, by Robin McKie, May 16, 2004.