President’s Corner - Data for Research
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Prior to starting PreventionGenetics, I worked for about 25 years in human genetics and genomics research. I therefore understand research and remain a strong supporter.
The primary activity of PreventionGenetics is clinical DNA testing. We are not a research institute. Yet we try to support research whenever and wherever possible. Many of our scientists participate in research projects and co-author research publications. We also frequently present at conferences and in seminars. But my topic today is the availability for research of testing data from PreventionGenetics.
Over 15 years of operation, we have generated a large amount of data that can be mined for research purposes. Our staff do not have the time and resources to make the best use of these data. So, with the proviso that patient privacy must always be protected, we welcome collaborations with non-profit researchers. With few exceptions, all of our de-identified testing data are freely available to researchers for publication purposes.
Primarily, our data consist of results of our clinical, germline DNA tests. Most of these data are sequencing results, but we also have accumulated a good amount of aCGH data. The data come from single gene tests, panel tests, and more recently very large panel and exome tests. Because we are not formally affiliated with any hospital or clinic, our access to clinical data is generally limited. However, it is possible to obtain this information from the ordering physicians.
Relatively few researchers will read this column, but those that do should pass the word. We very much want to share our abundant, useful research data with the world. Interested investigators may contact me or any of our other geneticists.