Clinical Data Sharing

The National Society of Genetic Counselors (NSGC) encourages the sharing of de-identified clinical and genetic information acquired by clinicians and laboratories from individuals undergoing clinical genetic or genomic testing. This includes evidence supporting gene-disease associations, relevant features of the individual’s phenotype, and a clear delineation of the amount and strength of evidence underlying individual variant classifications. Data should be shared in publicly accessible, non-proprietary databases that protect patient privacy in accordance with applicable state and federal regulations. Frameworks should be in place to ensure that information in such databases is reviewed systematically and kept as up to date as possible. Transparency about data-sharing practices should exist during the consent process for individuals undergoing testing.

Broadening access to genetic data is necessary for more consistent, accurate variant classification across laboratories and improves the collective understanding of the genotypic and phenotypic spectrums of genetic conditions. Responsible data sharing is essential to optimize the care of patients whose diagnosis, management, or treatment decision-making is based on genetic information. A lack of diversity and inclusion in genetic testing and data sharing practices may create an unequal distribution of data sharing benefits. It is therefore critical to engage underrepresented populations and confront issues of trust and accountability to address disparities and improve equitable access to the benefits of genomic data sharing. (Adopted April 2015, Revised August 2020)

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