I have written a number of times about DeCODE Genetics, an Icelandic firm that has built an online genealogy database of nearly every resident of the island nation since the twelfth century. The database is called the Icelandic Health Center Database (IHD). (For a list of past newsletter articles about DeCODE Genetics, look at http://tinyurl.com/3nudr.) The ancestry for the past 800 years of almost every Icelandic citizen is contained in that database. The information has been used to produce several medical breakthroughs in DNA-related medical problems. Now a ruling from Iceland's Supreme Court, handed down in November, may have dealt DeCODE's original plans a serious setback.
In 2000, Iceland granted an exclusive license to DeCODE Genetics to create and manage a central database of the entire country's medical records so that researchers could cross-reference that data with genetic and genealogical information. The results of the DNA studies led to new drugs that often are life-saving in nature. DeCODE launched a clinical trial in April for a heart attack prevention drug, with results expected by year end. It is also on track to begin a clinical trial for an arterial disease drug.
The license for the Icelandic Health Center Database (IHD) included conditions designed to safeguard citizens' privacy. Iceland's laws are similar to the United States in one regard: deceased individuals are presumed to have no right to privacy. Therefore, it is legal to collect and even publish personal information about deceased individuals, including medical data.
In its November decision, Iceland's Supreme Court ruled that the law creating the database did not comply with the country's privacy protections. (The court cited article 71 of the Icelandic constitution: "Everyone shall enjoy the privacy of his or her life, home and family.") The court ruled in favor of Ragnhildur Gudmundsdottir, a minor who filed suit in 2001 to prevent the records of her deceased father, Gudmundur Ingolfsson, from being transferred into the database.
Gudmundsdottir argued that she had a personal interest in preventing the transfer because it would be possible to infer from her father's hereditary information some characteristics that might also apply to her. The court ruling stated that she had the right to prohibit the transfer of her father's medical records into the database. The court also ruled that simply removing or encrypting information such as name and address were not sufficient to prevent the identification of individuals in the database.
The ruling creates a legal precedent for living relatives seeking to prevent the transfer of certain records into the database. In short, it says that information about deceased individuals could be used to determine likely information about their living descendants. If so, that is an illegal invasion of the privacy of those living individuals.
Obviously, this is a legal issue in a tiny nation; so, it is easy to shrug this off as being irrelevant to U.S. laws or the laws of other nations. However, this might be an early warning sign to geneticists, doctors, and genealogists since Icelandic laws about privacy are quite similar to the laws of the United States and other countries. In reaction to the Icelandic Supreme Court's decision, George J. Annas, chair of Boston University's Department of Health Law, Bioethics, and Human Rights, stated, "This ruling establishes that family members have privacy interest in the information of their deceased relatives." However, the ruling did not address whether presumed consent was sufficient for living Icelanders to be included in the database.
If a similar legal challenge is mounted here, will databases in our country be similarly affected?