articlehighlights

A biotechnology company is compiling a medical database of Iceland’s citizens. Opposition claims that this may lead to:

• violations of medical and personal privacy
• medical stereotyping of individuals, families, or the entire population
• discrimination based on medical or genetic data
• a monopoly on medical research and drugs by big business

June 2000

Icelandic family genealogy relies on the tradition?of using the first name of the father as the basis for a child’s last name.?”Sonur” is added to the fathers name if the child is a boy, and?”dóttir” if the child is female. Source: Virtually Virtual Iceland.

The government of Iceland has passed a law enacting the creation of a national health database. As first proposed, the bill required only medical and family history records to be included in the database. Opposition to the bill escalated when the government decided to add genetic information.¹ Mannvernd — an Icelandic organization of scientists, doctors, and concerned citizens opposed to the bill — stated upon the bill’s passage:

The association believes that this law infringes upon accepted medical, scientific and commercial standards.⁷

Parliament’s rationale for the inclusion of genetic data was that it might facilitate the identification of genetic traits and inherited diseases. Ultimately, drugs could be designed to attack such diseases at the source — the gene.

Background

• In December of 1998, after much heated debate, the parliament of Iceland passed a bill that allowed for the creation of a centralized database of all the Icelandic peoples’ genealogical, genetic, and personal medical information.⁶

• The parliament then granted an exclusive contract to deCODE genetics, a biomedical company, giving deCODE access to the national health records.²

• About a year prior to the bill, deCODE signed an agreement with Hoffman-LaRoche, a Swiss pharmaceutical giant, in anticipation of the contract. deCODE explained that it was searching for genes associated with over 30 diseases, 12 of which would be financed by Hoffman-LaRoche, e.g., heart attacks, emphysema, Alzheimer’s.⁹

• To research these diseases, deCODE began working with the voluntarily donated DNA of small groups of Icelanders. Later, the company launched a media campaign to attract DNA donors on a larger scale.⁹

• On January 1, 2000, deCODE announced that it had almost completed “The Book of Icelanders,” an extensive genealogical database of all Icelandic citizens, past and present, and was planning to publish it on the internet.

These actions allow deCODE to combine genetic information with the genealogical and health records of each Icelander in order to create a comprehensive database. With so much personal information available to a private enterprise, scientists and policy makers are watching the endeavor closely to see how the ethical, legal, and business aspects are resolved.

What makes the Icelandic genome ideal for study?

• Iceland’s population is relatively small — about 275,000 people.

• Detailed individual medical records have been maintained by public health services since 1915.

• Genealogy is an integral part of the culture — 80% of all Icelandic people who have ever lived can be traced on family trees. There is an advantage to having genealogical data when studying a group’s DNA, e.g., a list of people with a common disease can be run through the genealogical database to look for clues to genetic and environmental causes for the disease.

• The country is isolated geographically, with little migration from other places ever since a few hundred Vikings and some Celts arrived almost 1200 years ago. In addition, over the centuries, a series of disasters such as plague and famine, have minimized the opportunity for new genetic input into the country’s gene pool.

• Some scientists believe that the homogeneity of a population such as Iceland makes the search for genes associated with a disease a simpler task. deCODE has already discovered variations in the Icelander’s genome that may indicate susceptibility to multiple sclerosis, hereditary hand tremors, and osteoarthritis.

Although many other industrialized nations, e.g., the United Kingdom and Israel, are studying genetic diseases by looking at family records and group variations, the Icelandic project is unique because of the country’s size and homogeneity.

Why study a population rather than an individual?

• It is not the individual, but the population that changes over time. That is a key principle in the field of study called population genetics. Populations are not defined exclusively by geographical isolation but also by such factors as cultural heritage and family lineage.

• Unique genetic mutations may become fixed in a population. In the case of Iceland, along with the blue eyes and blonde hair, some of the population may have a genetic predisposition for one particular variant of a disease. It may be possible to identify, learn about, and eventually develop a cure for a genetic disorder when it occurs frequently in one population.

• Not all genetic diseases are revealed when studying the genes of a homogeneous group. deCODE is hoping to discover which diseases, common to certain groups in Iceland, have a similar cause because they have been inherited from the same ancestor.³

In some circumstances, studies in population genetics may have negative consequences. They can lead to theories of racial superiority, the exclusion of social and environmental causes of human illness, and eugenic pressures, i.e., to improve the hereditary qualities of a group or individual.

Why is there opposition to the project?¹⁰

• The database could violate personal privacy, easing access to health information that may be abused. An individual’s information is encrypted, deCODE maintains, but codes can be broken. Most experts who reviewed the project’s privacy measures consider the information in the database personally identifiable.⁴

• The plan presumes the consent of all Icelanders. A person may opt out of the database at any time but any data that has already been entered about this individual will not be removed. This person then becomes the subject of research without consent. In addition, the law does not require that Icelanders be told what kind of research will be done with their personal data.^5,8

• There is a possibility that the results of the project may have adverse effects, such as medical stereotyping. For example, research into one of the diseases financed by Hoffman-LaRoche is schizophrenia, a mental disorder. If a significant percentage of the population were found to have schizophrenia, would health insurers jump to the conclusion that anyone with an Icelandic heritage anywhere in the world is predisposed to the disease?

• As sole licensee, deCODE has a monopoly on the data. The database belongs to the national health system managed by the government but deCODE has the right to commercialize the data for 12 years. Legislation even assures deCODE that access to the data cannot be granted if it harms the financial interest of the company.⁶

• deCODE plans to market its information for a fee to interested parties, including pharmaceutical and health insurance companies. For example, the arrangement with Hoffman-LaRoche for 12 diseases effectively blocks anyone else from studying these diseases in Iceland.⁹

• Free medications for specific conditions have been promised to Icelanders. However, the gesture comes with a stipulation — deCODE and its business partners must first acknowledge that the medications were developed as a result of the database.

• The government has touted the national economic benefits to be gained from the partnership with private enterprise. Although deCODE pays the government an annual license fee, this fee covers only the costs of the database and administration.

• Both deCODE and the government have speculated that biotechnology jobs in Iceland will increase because of the project. They failed to add that in this internet-connected world, scientists could work with the data on a computer in any location. There has been no influx of scientific research or pharmaceutical facilities to Iceland since the project began. However, there are a few jobs available at deCODE.

Icelanders are asking themselves the same questions that we will all ask ourselves sooner or later:

• Who has the right to access and use our personal genetic information?

• Who controls the information?

• If medical records are used as a community resource, should they not be available to all research facilities within the community?

• Will the medication for a disease discovered through population genetics studies be freely available to the participants?

• Can anybody own parts of our genome through patents, copyright, and the like?

• Should genetic testing be done and how scientifically reliable is it?

• How will others perceive an individual whose genetic tests reveal a potential disorder?

• Will the information lead to discrimination by business or institutions?

© 2000, American Institute of Biological Sciences. Educators have permission to reprint articles for classroom use; other users, please contact editor@actionbioscience.org for reprint permission. See reprint policy.

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deCODE

deCODE, the company creating the Icelandic database, answers FAQs about the project.
http://www.decode.com

“Genome and Nation: Iceland’s Health Sector Database and its Legacy”

Read Winickoff’s article [Innovations 2006, 1 (2), 80-105] describing the history and current issues with this important, yet controversial medical database. Read the citation or log in to read the full article. http://www.mitpressjournals.org/doi/abs/10.1162/itgg.2006.1.2.80

Iceland’s geneology vs. database

“Gain for Science is History Buffs’ Loss” article (2/03) explains that Icelanders are only permitted to access their own family trees from deCode’s Icelandic genetic database.
http://classic.the-scientist.com/news/20030210/03/

Germany’s gene bank

“Germany’s independent science funding agency, the German Research Foundation, has given the ethical and legal ‘green light’ for establishing a gene bank in the country.” (9/03 article)
http://classic.the-scientist.com/news/20030910/02/

Primer on Molecular Genetics

This publication and the booklet “To Know Ourselves” from the Human Genome Project can be downloaded or read online. They cover what is known so far about the human genome, how the genome is sequenced, and ethical issues.
http://www.ornl.gov/hgmis/publicat/tko/

Understanding Gene Testing

A simple, easy question/answer format gives the basics about gene tests; sponsored by the U.S. Department of Health and Human Service. http://www.accessexcellence.org/AE/AEPC/NIH/index.html

Read a book

Genome: The Autobiography of a Species in 23 Chapters by Matt Ridley (Harpercollins, 2000) is a jargon-free exploration of the human genome and the implications of genetic research.

Mapping the Icelandic Genome

You can get involved in an international forum on the Icelandic genome project and get factual information about the project. The universities of Iceland and California at Berkeley created this site in response to the ethical concerns raised by this project.
http://sunsite.berkeley.edu/biotech/iceland/

Genetic Alliance

News, support groups, information on genetic conditions, as well as ethical, legal, and social issues. Also, a variety of ways to get involved (such as “action teams,” “advocacy groups,” and “e-mail discussion lists”) on its membership page.
http://www.geneticalliance.org/