Genetics analysis and reproduction: What is preimplanation genetic diagnosis? Personal Genetics Education Project (pgEd) Harvard Medical School - Wu Lab www.pged.org Complete lesson plans at: www.pged.org/curricula Please use and modify these slides as needed. If you retain our text or images, please also leave the “ personal genetics education project” logo in the lower right hand corner. Thank you very much! If you have questions, please contact us at dwaring@genetics.med.harvard.edu”.

Discussion Questions: If you could choose specific traits or qualities that you would want your child to have, what would you choose? Why? Are there any you would not want your child to have? What are they? Why?

personal genetics education project 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. personal genetics education project

personal genetics education project PGD being performed on a 3-day old embryo This image is of an 8-cell embryo in a petri dish, the object on the left holds the embryo is place, the object on the right is the tool to remove a single cell. Image via http://www.obgyn.net/Frontiers_In_Reproductive_Medicine/images/PGD.gif personal genetics education project

personal genetics education project Real Families impacted by PGD: Molly and Adam Nash and the Hashmis The first picture is of Molly and Adam Nash. Adam was conceived via PGD with HLA typing to be a perfect immunological match for his ill, older sister. They live in the US and were able to receive this treatment without government approval. Since the transplant, Molly has recovered and both children are doing well. The Hashmi family live in the UK where PGD is highly regulated. This is in contrast to the US, where there is very little federal oversight of what a private fertility clinic can offer to its clients. The UK has a government body that oversees and must approve any usage of PGD. Zain Hashmi was born with the rare and potentially fatal blood disorder thalassaemia (more on this condition: http://www.nhlbi.nih.gov/health/health-topics/topics/thalassemia/). Zain’s parents had to apply for permission to have a baby using IVF and PGD to conceive a child who would be a perfect match to donate stem cells to Zain. The Hashmi family saw their case languish for years during a prolonged series of hearings and injunctions. They eventually won approval, and Mrs. Hashmi gave birth to a child who was a match. One of the major differences in the UK is that the procedure, if allowed, is paid for by their national health care system; in the US, the procedure can cost up to $25,000. http://news.bbc.co.uk/olmedia/955000/images/_955928_nash150.jpg http://www.telegraph.co.uk/news/graphics/2007/08/01/nivf101.jpg personal genetics education project

personal genetics education project What % of IVF clinics provide testing for the following reasons? aneuploidy autosomal disorders chromosomal rearrangement X-linked diseases non-medical sex selection avoid adult-onset disease HLA typing Aneuploidy – an abnormal number of chromosones, which causes disorders such as Down’s Syndrome. HLA typing w/o single gene test Select for a disability personal genetics education project

personal genetics education project Public attitudes regarding acceptable uses of PGD: Note the percentage of people who think using PGD to select for intelligence or strength is acceptable. What does this tell us about how many people see genes acting on complex traits like intelligence or strength? This is an excellent point to highlight in terms of creating a classroom discussion around the lengths people would go to to give their children an “ advantage”, and to remind students that single-gene tests for such traits are highly unlikely. fatal HLA match adult onset disease sex Intelligence/ strength personal genetics education project

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

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? personal genetics education project

personal genetics education project For more information, please visit us at www.pged.org personal genetics education project