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Understanding Genes, Reflection on DIY Exploration of Commercial DNA Kits and Discussion with Ellen Matloff from My Gene Counsel

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DNA testing has now become available to consumers at amazingly inexpensive prices. This unlocks the potential for totally new preventative health interventions and insights, but also demands understanding of genetics and how to properly interpretative the tests. The data without understanding is not useful and misinterpretation can be dangerous.

This session will start with a primer on the basic concepts related to DNA and the tests commonly used for consumers, and a overview of tools for interpreting that data. This is followed by a personal reflection of  J.R. Logan who did a home genetic test in 2015 before the FDA allowed release of health information and used a 3rd party DNA analysis tool to discover a serious but treatable genetic disorder. This experience fueled enthusiasm for understanding the utlity of DNA and led to discoveries in the family genealogy and eventually doing a full genetic sequence.  JR will share insights from his process of finding resources and interpreting DNA data as a DIYer.

Ellen Matloff from My Gene Counsel will provide her own insights into how individuals can benefit from an understanding of their DNA in an ideal circumstance. She will contextualize the question of learning about your DNA health information in the larger debate within medicine and the risks of unguided interpretation. She wil also expanded on the issues of privacy and discuss the state of the marketplace for DNA companies.

Agenda

  • Primer on Conceptual Fundamentals of DNA (10 minutes)
    • High level of what data a DNA test produces
    • Providers of tests and typical results
    • Types of tests (full, partial, other options)
    • Common terms/concepts related to DNA testing and analysis
  • JR's Story and Insights as DIYer (10 minutes)
    • Tools for analysing data beyond tool providers
    • Examples of results from tools
    • Personal impact and insights
  • Ellen's perspective on genetic counseling (10 minutes)
    • What is genetic counseling
    • What is happening in field related to DNA
    • Privacy and larger social concerns
  • Discussion Question and Answer (25 minutes)
  • (optional) Live demonstration playing with online analysis tools