The National Society of Genetic Counselors (NSGC) recommends that laboratories, healthcare providers, patients, and individuals seeking genetic testing consider and be informed of the risks, benefits, and limitations of obtaining, releasing, and/or sharing raw genetic and genomic data. NSGC recognizes that current HIPAA guidelines protect a patient or individual’s right to access raw data. Interpretation of raw genomic sequences should be carried out by those with expertise in genetic and genomic analysis and variant classification, who have access to clinically validated tools for interpretation. Publicly available third-party data interpretation services may result in false positive or false negative results or non-comprehensive analysis. Patients and practitioners should review these results with a genetics specialist and should confirm any findings with potential clinical utility in a CLIA-certified and CAP-accredited laboratory before using them for healthcare decision-making.
NSGC recognizes the potential benefits of providing access to raw genomic data, while acknowledging the potential harm that release of this data may result in if not interpreted correctly or comprehensively. NSGC urges laboratories to make data storage policies readily available to ordering practitioners and to patients. Likewise, information about raw-data release, owning and accessing genomic data, and potential patient-privacy risks must be available to patients and individuals seeking genetic or genomic testing. (Adopted 2020
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