Personal genetics: What it might it means for me, my family and society Personal Genetics Education Project (pgEd) Harvard Medical School National Science Teacher Association 2013 San Antonio, Texas

review-my-top-10-stories-of-2011/ cans-2011/best-of-2011-medical- breakthrough #slide-15 One in a billion: Nic Volker Sequencing solved the mystery of his devastating illness One in a billion: Nic Volker Sequencing solved the mystery of his devastating illness

african-americans-family-trees / “DNA tests locate genetic branches of African American’s family trees” Photo credit: Steve Mellon

The Havasupai Case and informed consent The Havasupai Case and informed consent

Dana Waring, MA Co-Founder and Director of Education Personal Genetics Education Project (pgEd) Harvard Medical School Dana Waring, MA Co-Founder and Director of Education Personal Genetics Education Project (pgEd) Harvard Medical School

pgEd’s goal: To encourage thoughtful discussion about personal genetics so people can make informed choices for themselves, their families, and society. pgEd’s goal: To encourage thoughtful discussion about personal genetics so people can make informed choices for themselves, their families, and society.

Careers in science? Jim Henson, The Muppets

Guiding questions in all our lessons: Why does it matter to you? How do we evaluate risk, and weigh the risks and benefits about DNA? Do genes always predict what traits and conditions we are going to have?

personal genetics education project Knowledge about our DNA is becoming more detailed, inexpensive and widely accessible Insights about our health, behavior, family history and traits grow on a daily basis Highly personal information with social, legal and familial impact is available online and OTC Why is genetics getting more personal? Why is genetics getting more personal?

personal genetics education project “Under $1000 dollars in this decade” “Widely available in the next 5-10 years” “ Transforming health care for the next generation” Average age to marry in the US, : Men 26.7, Women 25.1 Average age of first-time mothers in the US, 2003: 25.2 Sources: census.gov, cdc.org, NYT Why is talking with students so urgent?

Big idea: Connecting genotype and phenotype Genetics You personal genetics education project

Big idea: Connecting genotype and phenotype GeneticsEnvironment You personal genetics education project

Photo: Reuters Photo: Evan Hurd Photo: Reuters

Direct to consumer ( DTC) analysis for sale on the internet

Sample traits from Direct-to-consumer genetic testing company 23andme

What information would you like to have about your risks for various diseases? Might your opinion change at different points in your life?

personal genetics education project Why personal genome analysis? Curiosity about ancestry, family history Ideas for medical tests and interventions if I learn I’m at risk To find the right drugs, in the right doses, for my conditions Motivation to my change habits Planning for my long term medical and financial needs To inform my reproductive decisions

personal genetics education project Personal genomes: what are the challenges? Personal genomes: what are the challenges? 1. How far ahead is the technology of its clinical usefulness? 2. How much information would you want to know? 3. Will fair weight be given to environmental & social factors? 4. How will your genetic information affect your family? 5. How much should we be concerned about discrimination at work and by insurance companies? 6. How can we ensure access for all?

personal genetics education project “ The first civil rights legislation of the 21st century ” -Senator Ted Kennedy Genetic Information Non-discrimination Act (GINA)

personal genetics education project Title 1: Prohibits discrimination in group and individual health insurance plans. Forbids genetic information being used to deny coverage, adjust premiums, or require someone to take a genetic test. Title 2: Prohibits employers from using genetic information to make hiring, firing or promotion decisions. Severely limits employers rights to request, require, or purchase an employee’s genetic information. GINA: Prohibits discrimination in health insurance and employment GINA: Prohibits discrimination in health insurance and employment

What are some of the big social issues in personal genetics? Athletics and genetic testing – how much can DNA reveal about ourselves and our potential? DNA and the law - Can we use DNA to keep us safe and preserve civil liberties at the same time? How do we decide to use a new reproductive technology? pgEd lesson plans: All Common Core aligned, tackle these issues, active classroom, all free! WANT TO PILOT A LESSON?

What might a “sports gene test” tell us? personal genetics education project

What leads to excellence in sports: Genes? Environment? Training? Drive? Image via Image via nhl.com Image via NYT/Chang W. Lee Image via indiadaily.com

personal genetics education project Connections between genetics and athletics? Connections between genetics and athletics? There are genes involved with collagen production that are thought to be useful in predicting certain types of soft tissue injuries. A small study indicates a possible link between having the ApoE4 variant and increased risk of severe effects from a concussion. What is the predictive power of these variants? (genetics vs. environment)

ApoE4 and concussions: A new area of inquiry ApoE4 variant is also associated with Alzheimer’s disease (AD). People with one copy of the variant, ApoE4, have 3x higher risk for AD. People with two copies of the ApoE4 variant have 15X higher risk for AD. personal genetics education project

ApoE4 and concussion risks? How does one weigh the benefits and risks of knowing about one’s genetic status related to AD? Would you want to test your child to help decide which sports to possibly avoid or to pursue? How much does the genetic component matter? Is this a family decision? Why or why not? personal genetics education project

DNA and society: New ways to use DNA to solve crimes DNA and society: New ways to use DNA to solve crimes

Scientific American 2011

personal genetics education project DNA as identification tool: beyond individual crimes DNA as identification tool: beyond individual crimes

personal genetics education project The Innocence Project: Exonerated 274 people, 17 of these exonerations were death row inmates 70% of exonerations have been people from minority groups DNA collections used to prove innocence

personal genetics education project “A Not So Perfect Match” The Darryl Hunt case on 60 Minutes “A Not So Perfect Match” The Darryl Hunt case on 60 Minutes Journal Photo by David Sandler)

personal genetics education project PGD being performed on a 3-day old embryo Image via

personal genetics education project What is preimplantation genetic diagnosis (PGD)? What is preimplantation genetic diagnosis (PGD)? PGD is a method to test for certain genetic traits in an embryo, almost always for genetic disease. An embryo is created via in vitro fertilization. Genetic testing occurs when embryo is 2-4 days old, typically at the 8-cell stage. A single cell is removed and tested. The results of testing are used to decide which embryos, if any, to implant in prospective mother’s uterus.

Molly and Adam Nash Fanconi anemia (disorder of DNA repair) Cure: PGD, umbilical cord blood stem cells

Hudson 2006 Fertility & Sterility Public attitudes regarding PGD Fatal TransplantsAdult illness GenderStrength & Intelligence Men Women

Wants a total ban on PGD Supports government regulation of safety and quality Thinks government should regulate ethics only Supports no government regulation Believes government should regulate safety, quality and ethics Opinion poll: What role, if any, should the US government play in regulating preimplantation genetic diagnosis (PGD)?

personal genetics education project Discussion Questions What are the potential opportunities and challenges of PGD? Now that we’ve discussed the issue a bit, did you change your opinion about whether you’d want to choose certain traits for your child? If your parents used this on you - should they tell you? Or is it no big deal? Do we need rules to guide how this is used? If yes, what sort of rules? Whose job would it be to enforce them?

5 questions, no genetics expertise needed. Map pictured is 14 days post Map-Ed launch