Stuart Leavenworth reports:
REYKJAVÍK, ICELAND — Sometime in the future, U.S. researchers will be able to press a button and reliably identify the thousands of people who carry cancer-causing genes, including those that trigger breast cancer.
In Iceland, that day is already here. With a relatively uniform population and extensive DNA databases, Iceland could easily pinpoint which of its people are predisposed to certain diseases, and notify them immediately. So far, the government has refused to do so. Why? Iceland confronts legal and ethical obstacles that have divided the nation and foreshadow what larger countries may soon face.
On one side of the debate there, you have those who argue that of course you should tell people, but their argument strikes me as seriously flawed:
“That is utter, thorough bulls–t,” Dr. Kári Stefánsson, a world-renowned Icelandic neurologist and biotech leader who has been at the center of the nation’s DNA debate, told McClatchy in an interview in his Reykjavík office. “There is a tradition in American society, there is a tradition in Icelandic society, to save people who are in life-threatening situations, without asking them for informed consent. Should there be a different rule if the danger is because of a mutated gene?”
But Dr. Stefánsson’s argument fails when you consider that in these genetic cases, you are generally not talking about warning someone of imminent life-threatening decisions that need to be made. This is definitely NOT comparable to the situation in which a person is unconscious when brought to an emergency room, and the medical personnel are permitted legally and ethically to assume that they do have consent to treat, because failure to make that assumption is likely to lead to death of the patient.
If we are talking about notifying people that they are predisposed to certain diseases, well, they genereally do have some time to think about whether they would want to be warned or not. Does Dr. Stefánsson think that he has a duty to inform that somehow trumps a person’s right to decide that they do not want to know their future or fate?
The more difficult question I see is what do we do about notifying parents – and teenagers – about the likelihood that teens or youth are at risk. If there is nothing that can be done to change the eventual outcome – i.e., if the person will still get the disease no matter whether you tell/warn them or not, what have you accomplished by alerting them? I suppose one could argue that you allow the person to make more informed life decisions, e.g., maybe they will decide not to have children if they know there is a very high risk that they would be passing along a currently incurable genetic disorder that might cause pain or suffering for any offspring. Or perhaps they will decide that if they are going to lose cognitive function early, they may not want to spend ten years in academic studies but would enjoy life more if they focus on other things.
There’s much to think about and discuss. And I think an argument could be made that supports Dr. Stefánsson’s firm belief that people should be informed, but he hasn’t made his case by trying to make the analogy he tries to make.
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