Consent concerns

March 10, 2000

Martin Ince states that "the near-complete genetic database of the population of Iceland being built by the US firm deCode Genetics may be shunned by major pharmaceutical companies because it does not involve the active consent of the people being studied" ("Genetic data hits consent setback", THES, February 18). This is incorrect.

* The planned database is not genetic but a collection of coded and encrypted data from patient records

* deCode Genetics is not a United States company

* The database is not being shunned by major pharmaceutical companies

* If we assume that the author is talking about the planned database of encrypted health-care information, it is true that the patients in Iceland will not be asked for informed consent before data is entered. Unencrypted patient information is used without informed consent for research purposes worldwide. But in Iceland we encrypt the IDs for privacy and people can refuse to participate.

If the author in fact intended to talk about a "genetic database", that is, a data collection based on DNA information derived from blood samples, no blood samples are or will be collected in Iceland without informed consent from patients. Icelandic legislators decided that patients must have the option to prevent researchers from using their medical records.

This means that Iceland is doing more than most other countries to secure the rights of patients. At the same time, the Health Ministry of Iceland and the Data Protection Commission have set data security and encryption requirements that will be an example for others to follow.

Arni Sigurjonsson Press office, deCode Genetics

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