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For Sale: Iceland's Genetic History
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
The national health database will include genetic information about all Icelanders.
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.
The database was created by government but it was contracted out to a biotech firm.
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.
Family histories are part of the database.
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.
Most Icelanders can trace their ancestry back 1200 years.
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.
Homogeneity is a big plus in studying genetic disorders of populations.
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?
Population genetics can reveal mutations unique to a specific group.
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
Icelanders can’t opt to remove their medical history from the database.
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?
deCODE has a monopoly on the medical information and it plans to market it.
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:
Conclusion: Iceland’s medical database issues will likely impact policies in other parts of the world.
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 firstname.lastname@example.org for reprint permission. See reprint policy.
For Sale: Iceland's Genetic History
deCODE, the company creating the Icelandic database, answers FAQs about the project.
“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.
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.
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)
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.
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.
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.
Teaching Resources from the Northwest Association for Biomedical Research (NWABR)
The Northwest Association for Biomedical Research (NWABR) strengthens public trust in research through education and dialogue. Its diverse membership spans academic, industry, non-profit research institutes, health care, and voluntary health organizations. Through membership and extensive education programs, it fosters a shared commitment to the ethical conduct of research and ensures the vitality of the life sciences community.
The Ethics Primer provides engaging, interactive, and classroom-friendly lesson ideas for integrating ethical issues into a science classroom. It also provides basic background on ethics as a discipline, with straightforward descriptions of major ethical theories. Several decision-making frameworks are included to help students apply reasoned analysis to ethical issues.
Bioethics 101 provides a systematic, five-lesson introductory course to support educators in incorporating bioethics into the classroom through the use of sequential, day-to-day lesson plans. This curriculum is designed to help science teachers in guiding their students to analyze issues using scientific facts, ethical principles, and reasoned judgment.
ActionBioscience.org original lesson
This lesson has been written by a science educator to specifically accompany the above article. It includes article content and extension questions, as well as activity handouts for different grade levels.
Lesson Title: Iceland’s Genetic Database: Good or Bad Idea?
Levels: high school - undergraduate
Summary: This lesson examines issues stemming from genetic databanks and population genetics studies. Students can investigate inherited diseases, illustrate methods of sequencing the human genome, evaluate web sites of organizations involved in the Icelandic debate… and more!
(To open the lesson’s PDF file, you need Adobe Acrobat Reader free software.)
Lessons for middle school
- » Monstrous Mutations
An experiment that helps students understand DNA, which is the genetic material for every person and every other living thing, using ordinary material such as peanuts and duct tape.
- » People Are Like Peas in a Pod
Students use a Punnett Square to understand how dominant traits, recessive traits, genotypes, and phenotypes help produce variation in a population.
Useful links for educators
In addition to the links in the “learn more” section above:
- » Medical Privacy Tutorial
Take a short, online tutorial about “Personal Privacy and Access to Medical Databases.”
Included are classroom activities to enhance teaching of the topic. From Berkeley National Laboratory’s Ethical, Legal, and Social Issues in Science program. http://www.lbl.gov/Education/ELSI/privacy-main.html
Useful links for student research
In addition to the links in the “learn more” section above:
- Andersen, Bogi and Arnason, Einar. 1999. “Iceland’s database is ethically questionable.” British Medical Journal, June 1999; 318:1565.
- Berger, Abi. 1999. “Private company wins rights to Icelandic gene database.” British Medical Journal, January 1999; 318:11.
- Edwards, J.H. (1999) “Unifactorial models are not appropriate for multifactorial disease.” British Medical Journal, May 1999; 318:1353
- Health Committee of Althing conclusions about the bill’s lack of privacy measures: http://www.mannvernd.is/english/articles/30.11.1998healthcomittee.html No longer available, 6/29/10
- Hauksson, Pétur and Sigurdsson, Skúli. 1999. “Icelanders opt out of genetic database.” Nature 400, 19 Aug. 1999 correspondence, 707-708.
- Icelandic government, terms of database agreement:
http://www.mannvernd.is/english/articles/agreement.html No longer available, 6/4/10
- Mannvernd Home Page: The official opposition’s site to the Icelandic database project, with links to media stories, government and medical articles, and viewpoints. http://www.mannvernd.is/english/home.html No longer available, 6/4/10
- Mannvernd, summary of the database bill and informed consent: www.mannvernd.is/english/articles/tzdatabase.html _No longer available, 6/4/10
- Palssen, Bernhard and Thorgelnsson, Snorri. 1999. “Decoding developments in Iceland.” Nature Biotechnology, Vol. 17, May 1999, p. 407.
- For additional opposition opinions on particular issues, see www.mannvernd.is/english/articles/03.12.1998summaryofopinions.html _No longer available, 6/4/10
DNA (deoxyribonucleic acid) - The genetic material of most living organisms, which plays a central role in determining hereditary characteristics, e.g., hair color or predisposition to cancer in humans.
Gene - A unit composed of DNA that can be passed on by parent to offspring, e.g., blue eyes.
Genealogy - Lines of descent or an account/chart of a person or family from an ancestor.
Genetic information - Information relating to an organism’s genetic makeup, including predisposition to a disease.
Genetic mutation - A gene can mutate, or change, resulting in a different appearance or behavior from a normal or parental gene.
Genome - All the genes contained in a single set of chromosomes which each parent, through their reproductive cells, contribute to their offspring.
Homogeneity - Having similar elements, parts, or characteristics.