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.
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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?
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“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.”
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“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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