In the context of the multitudinous business plans of various direct-to-consumer genomics companies, any informed analyst should wonder: Can we (healthcare consumers) understand the information communicated by the long-promised, now available, large personalized genomic data sets? This in the context of much evidence that doctors cannot correctly interpret genetic tests and can be readily influenced by genetic testing companies.
With funding from the NIH, we are trying to study how to have patients manage, control and understand their own genomic data. There are several ways you can help but perhaps most importantly it is those who have had experience as consumers of genetics counseling who could help by serving as study subjects to determine what works and what does not in web-borne computer interfaces for direct-to-consumer disclosure of genetic risk data.
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