Genetics and reproduction Personal Genetics Education Project (pgEd)

1. Genetics and reproduction Personal Genetics Education Project (pgEd) Harvard Medical School - Wu Laboratory www.pged.org

2. 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 traitsyou would not want your child to have? What are they? Why?

3. Genetic reproductive technologies can be used to: • Gain genetic information about an embryo or unborn fetus. • Help individuals conceive. • Allow individuals to select embryos based on their genetic makeup.

4. Prenatal testing Invasive testing: Amniocentesis and chorionic villus sampling

5. Non-invasive prenatal testing (NIPT) • Fetus and mother share a blood supply. • Fetal cells release DNA, which can then enter the maternal blood stream. • Maternal blood now contains a mixture of fetal cell-free DNA and maternal cell-free DNA. http://www.monashultrasound.com.au/images/NIPT_clip_image003.jpg

6. http://www.nature.com/news/researchers-turn-off-down-s-syndrome-genes-1.13406http://www.nature.com/news/researchers-turn-off-down-s-syndrome-genes-1.13406

7. What is in vitro fertilization (IVF)? • In vitro fertilization is a technique used to treat infertility. • A woman has eggs harvested from her ovaries, after taking hormones to stimulate egg production. The eggsare then combined with sperm in a petri dish. • After 3-5 days, the embryos are assessed, and a doctor/embryologist determines which embryos are of the highest quality. • One or more embryos are then placed in the woman’s uterus. The embryo(s) may or may not attach and lead to pregnancy.

8. Theembryo is created via in vitro fertilization. • Typically, a single cell is removed from the embryo at the • 8-cell stage (3 days after fertilization). • Genetic testing is performed. • The results of testing are used to decide which embryos, • if any, to implant in theprospective mother’s uterus. What is preimplantation genetic diagnosis (PGD)?

9. PGD: Pre-implantation Genetic Diagnosis Schwartz 2011 Jewish News

10. A Real Family impacted by PGD: Molly and Adam Nash Fanconi anemia (disorder of DNA repair) Cure: PGD, umbilical cord blood stem cells http://tvnoviny.sk/sekcia/spravy/zahranicne/vo-francuzsku-sa-narodilo-prve-dizajnerske-dieta.html

11. aneuploidy autosomal disorders chromosomal rearrangement X-linked diseases non-medical sex selection What % of IVF clinics provide testing for the following reasons? avoid adult-onset disease HLA typing HLA typing w/o single gene test Select for a disability http://www.dnapolicy.org/resources/GeneticTestingofEmbryos.pdf

12. Public attitudes regarding acceptable uses of PGD: Fatal HLA match Adult onset disease Sex Intelligence/ strength http://www.dnapolicy.org/resources/2006_Hudson_PGD_public_policy_and_public_attitudes.pdf

13. Opinion poll: What role, if any, should the government of the United States play in regulating PGD? Want a total ban on PGD Support no government regulation Think government should regulate ethics only Support government regulation of safety and quality Believe government should regulate safety, quality and ethics http://www.dnapolicy.org/resources/2006_Hudson_PGD_public_policy_and_public_attitudes.pdf

14. Discussion Questions • What are the potential opportunities that PGD can provide and what are the challenges of PGD? • Now that you have discussed PGD, have you changed your opinion about whether you would want to choose certain traits for your child? • If your parents had applied PGD to you, should they tell you? Or would you prefer not to know? • Do we need rules to guide how PGD is used? If yes, what sort of rules? Whose job would it be to make and enforce such rules?