No. Samples included in AmbryShare were completely de-identified (made anonymous) and we cannot connect them back to the person they came from.
No. Since all samples were anonymized, we are not able to pull out an individual patient’s data. Additionally, all exome sequencing performed for this group of patients was performed under research parameters and not at a clinical grade (or level); therefore, we cannot release research grade exome data to patients.
Your privacy is protected within AmbryShare. If you are included in the AmbryShare database, the results cannot be traced back to you. Here are the reasons why:
If your doctor or genetic counselor orders your genetic testing through Ambry Genetics, there is a place on the test ordering form for your doctor or genetic counselor to specify whether or not you would like your sample to be used for research purposes. If you say yes, you might be included in AmbryShare.
No. As mentioned above, all samples were de-identified and data were reviewed in an entire aggregate. The study does not allow us to trace any data, findings, or results back to individuals. However, we do hope that researchers will use AmbryShare to learn new things that will improve how we diagnose and/or treat disease.
The world would be a better place if all human disease was understood. We hope the scientific community finds utility in the AmbryShare database and dataset to better understand disease on their own and/or in collaboration with Ambry. We encourage the following groups to use this database:
The AmbryShare database: This includes anonymized aggregate allele frequency data derived from exome sequencing of 10,000+ patients with disease. Here is an example of how the aggregate data would look for a particular variant (click image to enlarge): The Data: Request to download the aggregated cohort data (VCF File). Again, no individual sequence data or detailed clinical information is included in this dataset.
Samples were selected from patient samples received at Ambry Genetics for clinical genetic testing, focused on breast and ovarian cancer. All patients consented to the use of their sample for research.
Based on strict adherence to our research protocol, which was IRB-approved as exempt, only the type of disease the patient had will be provided (e.g. breast cancer).