Scenario: Genetic Data

Debora Weber-Wulff

[A real case]

A company was started in Iceland in 1996 and was working on determining genetic markers for specific diseases. When the human genome was sequenced in 2003 the company began storing the data for all of the inhabitants of Iceland.

There are only 300.000 inhabitants and they are quite strongly interrelated. In addition, the government has a lot of publically obtainable information about the inhabitants, that can easily be linked to other data using the tax number that every citizen is given. The Icelandic government also gave the company access to all health records in the country.

Icelanders are very enthusiastic about science and modern technology, and they willingly lined up to donate their data and DNA.

The company managed to set up a complete database, and was finding many interesting markers for certain kinds of diseases, and were successful in finding many markers for diabetes and some forms of cancer. But the Icelandic economy took a nosedive in 2008, and before long there was no money to continue the operation. The company filed for bankruptcy and began selling off assets to cover their debt.

The company was discovered to be in litigation against five former researchers, who left the company and moved to the United States, taking copies of the data with them. The researchers had been working on some long-year projects on determining predisposition to certain forms of cancer and were worried that the data might disappear if the company went broke.

An Icelandic woman had also sued the company to keep them from disclosing information about her and her now deceased father. Since she shares half of his genetic markers, releasing his health records would make information about her available. She won her case before the Icelandic Supreme Court, who determined that the company had not properly observed Icelandic privacy laws.

Questions:

• Who are the actors in this scenario? There may be unnamed actors, and not all named actors are truly involved in the case.
• What are the ethical problems (not the legal problems) involved in this scenario?
• What will happen if another company purchases the database from this company? What are the ethical aspects of economic problems? Should the database be destroyed? What should happen in a case like this?
• What should the researchers have done, when they saw their company in danger of going broke and their research threatened?
• What if companies could request that prospective employees submit a genetic record, similar to a credit record, showing them to be free of predisposition to certain diseases? What are the implications of this?

Created for a workship for the Master’s Program in Computational Neuroscience, Charité, Berlin in 2010.