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A few patients reported challenges with trust and communication:
I had to decide if I wanted to fight my initial endocrinologist about having genetic testing. He told me it was very expensive and since my children were adopted it wasn’t critical. When I asked about my siblings, he shrugged.
Both patients and family members (16/54, 30%) focused on the need for help dealing with uncertainty, clarifying risks, and weighing future effects on quality of life.
JMIR Form Res 2021;5(7):e27484
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