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Should doctors inform patients if they have untreatable genetic diseases?

| | September 26, 2016

Ethical considerations related to consent, privacy, and confidentiality have been upended by genetic testing, according to members of a panel…at the European Society for Immunodeficiencies 2016 Biennial Meeting.

In the future, gene sequencing will likely be used to screen newborns for primary deficiencies, [Alain Fischer] pointed out….

Patients must wrestle with how much they want to be told and whether they can trust that the information will be confidential. And…if there is no treatment for a disease, do patients, or their parents, want to know they have it?

“We need to do research in sociology to better understand how people perceive the information we give to them,” [Dr. Fischer] added. “It’s no longer a question.”

“I don’t think it’s a privilege of patients to say they have a right to remain ignorant,” Dr. [Simon] Woods explained. “I know some people choose not to know their genetic heritage, but it seems…reasonable to challenge that in a gentle and fair way because patients, too, have moral responsibilities,” he said.

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The GLP aggregated and excerpted this blog/article to reflect the diversity of news, opinion and analysis. Read full, original post: Genetic Test Results Spur Ethical Dilemmas

The GLP aggregated and excerpted this article to reflect the diversity of news, opinion, and analysis. Click the link above to read the full, original article.
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