What is personal genetics? What might it mean for me, my family and society? Personal Genetics Education Project (pgEd) Harvard Medical School

Do Now: Discuss with the following questions with the person (or people) next to you - 1.What are the potential benefits to knowing more about your genetic predisposition to disease? 2.What are the possible negatives to knowing? 3.Why are some people very interested in learning more about their DNA and others don’t want to know anything?

personal genetics education project Why is genetics getting more personal? Insights about our health, behavior, family history and other traits Highly personal information with personal, social and familial impact Genetic testing available directly to consumers Because learning about our own DNA is rapidly becoming inexpensive and accessible

“Under $1000 dollars in this decade” “Widely available in the next 5-10 years” “Transforming health care for the next generation” Sources: New York Times Why does this matter to you? personal genetics education project

iPad 2012 ENIAC 1946 Technological Advances

Oxford Nanopore MinION 2012 Applied Biosystems 3730 DNA Analyzers 2002 Genome Sequencing Technology

personal genetics education project Why personal genome analysis? For people who are healthy: To learn about my future health risks: Motivation to change my habits (ex: cancer screenings) Planning for future (ex: medical and financial needs) To inform my reproductive decisions To explore my ancestry, family history

personal genetics education project Revealing our personal genomes Our genomes are over 99% identical Remaining GENETIC VARIATION

personal genetics education project Revealing our personal genomes Our genomes are over 99% identical Remaining GENETIC VARIATION VARIANTS MUTATIONS Terminology: How do we talk about our genetic differences?

personal genetics education project Revealing our personal genomes Our genomes are over 99% identical Remaining GENETIC VARIATION VARIANTS MUTATIONS Terminology: How do we talk about our genetic differences?

A major goal of genetics research is to understand the relationship between your DNA and your traits ? personal genetics education project Appearance Behavior Health /sizes/l/in/photostream/

Even identical twins are different: DNA alone does not determine who we are personal genetics education project Appearance Behavior Health /sizes/l/in/photostream/ Environment and Social Factors

personal genetics education project A true story highlights the promise of personalized medicine

Direct-to-consumer analysis for sale on the internet

personal genetics education project Personal genomes: what are the challenges? 1. How far ahead is the technology of its clinical usefulness? 2. How much might this information impact you and your family? 3. Will fair weight be given to environmental & social factors? 4. How much should we be concerned about discrimination at work and by insurance companies? 5. How can we ensure access for all?

Four Corners activity

People won’t be able to handle the information they learn from DNA tests without counseling from a doctor or other professional.

People should have the right to learn whatever they want to about their DNA because it is their own body.

I would only want to find out my likelihood of developing a disease if there are ways to prevent or treat it.

I should get permission from my parents and siblings before learning about my DNA and my risks for disease because this information impacts them as well.

Parents should be able to find out about their children’s DNA before they turn 18.

I would want to know if someone I was dating had a genetic condition that would likely cause a serious disease.