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GEDHJALP
Contact Information:
Mr. Ingolfur Ingolfsson
GEDHJALP
Tryggvagata 9
101 Reykjavik, Iceland
Telephone: (354) 552-5990
Fax: (354) 552-5029
In recent years, Reykjavik, Iceland has become one of the world’s centers for genetic research. Large corporations specializing in such activities have been busy setting up offices and laboratories throughout the city anticipating major scientific breakthroughs. Even though this research is not limited to mental health, these corporations’ ambitiousness has surprised consumer advocates and placed them in a reactive posture. An Icelandic mental health organization by the name of GEDHJALP now finds itself in the midst of some challenging and unique advocacy issues. GEDHJALP provides public education and information, offers a drop-in center program, and conducts advocacy at all levels, and its experiences may very well provide consumer advocates worldwide with insights and effective strategies on how to deal with genetic research companies and their capacity to sidestep ethical concerns.
A quirk of Icelandic culture has paved the way for this battle over establishing the proper protocols for genetic research. For centuries, the Icelandic people have been interested in genealogy, and they have tracked and documented extraordinarily detailed histories of their ancestors called sagas. These sagas, often of book length, are so detailed that they will document illnesses, romances, political and economic conditions, offspring, and even the idiosyncratic behaviors of ancestors. For decades, it has, moreover, been customary for Icelandic people to preserve blood samples and other human tissues of their relatives. From storing ancestors’ blood in an archival blood bank to keeping strands of hair in an heirloom on the coffee table, these genetic samples are precisely what today’s many genetic research companies seek.
At the same time, Iceland has one of the highest suicide rates in the world. Over the years, numerous education and media-based programs have been employed to curb this epidemic. However, none of these programs have been successful. Therefore, many scientists have concluded that this high rate of suicide must be influenced solely by a person’s genetics. These scientists have been very persuasive in their arguments and many in Iceland feel that genetic research will reveal the solution to this problem. Currently, rather than attempting to receive permission from the legislature, genetic research companies in Iceland are trying to lobby politicians to allow research to occur without any regulations or guidelines. Thus, the efforts of lobbyists have created an enormous amount of tension, both socially and politically, in the country.
GEDHJALP, which is not unconditionally opposed to genetic research, has pointed out that the rights of persons with psychiatric disabilities will be compromised if this research progresses without any safeguards. For example, GEDHJALP is concerned that the data generated from an individual’s genetic coding might be used to discriminate against him in the areas of employment and insurance. This data, they fear, could be used in a way similar to that of financial credit reports. Although the research companies are promising to encrypt data so that it cannot be used to discriminate, many advocates view this as a promise that easily can be broken – particularly in a climate of no national laws that obligate companies to protect the data.
In their enthusiasm to secure DNA samples, according to consumer advocates, the private genetic research firms have ignored many important ethical issues. While consumers in other countries are enjoying the benefits of consumer-run programs, the consumer advocates in Iceland are busy defending their rights and reacting to the intrusive actions of these well-financed corporations.
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