What is it about?
From the patient perspective, genetic testing for ADPKD is not a straightforward decision. Many impacts must be weighed, including psychological, financial, lifestyle, and agency.
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Why is it important?
Whether or not to administer a genetic test to an infant or adolescent (anyone under 18 - the age of "consent"), multiple perspectives must be considered, including those of the parents and child. Once the test is completed, there is no going back. It is not simply a decision only for scientists, physicians, government agencies, or the health insurance system.
Perspectives
Although I authored this paper alone, the thoughts and recommendations herein are based on my 15 years of experience serving as a volunteer for the PKD Foundation, where I have worked to educate and support patients and their families. In that time, my role has been to educate, support, and (most importantly) listen to more than 500 patients, and through that, I have come to learn their key considerations in areas related to genetic testing. This paper is their voice on the subject.
Dwight Odland
PKD Foundation
Read the Original
This page is a summary of: A Patient Perspective on Genetic Testing for ADPKD, Clinical Journal of the American Society of Nephrology, July 2020, American Society of Nephrology,
DOI: 10.2215/cjn.14051119.
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