1. Designer Babies The Future of Reproductive Technology Technology. Eugenics. Design Discussions Worth Sharing

2. Outline Background Who is it for Canadian statistics and regulations Discussions Reflections Future directions Summary Discussions worth Sharing

3. Objective General understanding of preimplantation genetic diagnosis (PGD) technology Gain a wider perspective on cultural, religious and social implications Think actively, discuss openly, participate! Discussions worth Sharing

4. Background Designer Baby – Discussions worth Sharing “a baby whose genetic make-up has been selected in order to eradicate a particular defect or to ensure that a particular gene is present”

5. Background Preimplantation Genetic Diagnosis (PGD) Assisted human reproductive technology Screening of embryos for genetic abnormalities prior to transferring to the uterus In vitro fertilization consists of: 1) Ovarian stimulation 2) Egg retrieval 3) Egg fertilization 4) Embryo development 5) Embryo transfer Discussions worth Sharing

6. Who? Individuals or couples who are at risk to pass on a condition that is the result of a variant in a single gene Individuals or couples with a chromosome condition, or who have had a previous child with a chromosome condition Women who are at an increased risk to have a child with a chromosome condition due to their age Discussions worth Sharing

7. Canadian Statistics - 2010 22 769 patients underwent in vitro fertilization over the past 5 years 61% of fertility clinics responded (17 out of 28 clinics) – 6 performed embryo biopsy on site – 7 referred to other units in Canada – 3 referred to units in U.S. Majority do not offer PGD due to: – Lack of resource/staff/money/expertise – No market demand – Not convinced it would yield accurate diagnosis Discussions worth Sharing

8. Regulations Assisted Human Reproduction Act (2004) Prohibited Activities – Create a human clone – Create an in vitro embryo for any purpose other than creating a human being – Maintain an embryo outside the body after 14 days of fertilization – Alter the genome of a cell of a human or in vitro embryo – Gender selection for non-medical reasons Discussions worth Sharing

9. Discussions Controversies

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11. Discussions Selecting for a disability Discussions worth Sharing “Being deaf is not about being disabled, or medically incomplete - it's about being part of a linguistic minority. We're proud, not of the medical aspect of deafness, but of the language we use and the community we live in.”

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13. Discussions First born child: 76% have no gender preference More than one child: 30% want equal number of girls and boys, and 58% have no preference Using technology: 92% against it Discussions worth Sharing Surveyed among pregnancy women: 58% had no gender preference Couples undergoing fertility treatment: 40% would like to select the sex of their baby 234 surveyed: 39% have no preference 39% prefer a girl 22% prefer a boy

15. Discussions Adam Nash One of 15 embryos Saved his sister suffering from Fanconi’s anaemia Great achievement or unethical? Discussions worth Sharing

16. Reflection Religious, Cultural, Societal Impacts Discussions worth Sharing

17. Religious Impacts Dignitas Personae “Preimplanation diagnosis…constitutes an act of abortion... By treating the human embryo as mere ‘laboratory material’, the concept itself of human dignity is also subjected to alteration and discrimination…Such discrimination is immoral and must therefore be considered legally unacceptable…” Discussions worth Sharing

18. Cultural Impacts India – Prefer boys Discussions worth Sharing China – Country side Prefer boys

19. Social Impacts Socioeconomic disparity Discrimination – Social activists – Disability activists Eugenics – “the science of improving a population by controlled breeding to increase the occurrence of desirable heritable characteristics” Discussions worth Sharing

20. Future Directions More research, increased market demand, increased access to screening – More on-site PGD More will choose PGD over other methods When should it be refused? What to regulate? Should government provide funding? Discussions worth Sharing

21. Summary Science and technology is always evolving No right or wrong views Religious, cultural, societal influences Keep an open mind Discussions worth Sharing “The important thing in science is not so much to obtain new facts as to discover new ways of thinking about them.” - Sir William Lawrence Bragg More information at: http://futurebabies.weebly.comhttp://futurebabies.weebly.com

22. References 1.Collins M. Designing Rules for Designer Babies. Sci Am. 2009;300(5):29. 2.Crockin S. Adam Nash: legally speaking, a happy ending or slippery slope? Reprod Biomed Online. 2001;2(1):6-7. 3.Dahl E. Procreative liberty: the case for preconception sex selection. Reprod Biomed Online. 2003;7(4):380-4. 4.Edwards RG. Ethics of PGD: thoughts on the consequences of typing HLA in embryos. Reprod Biomed Online. 2004;9(2):222-4. 5.Klitzman R et. al. Anticipating issues related to increasing preimplantation genetic diagnosis use: a research agenda. Reprod Biomed Online. 2008;17 Suppl 1:33-42. 6.McMahon CA. Community concerns about sex selection: research as a way forward – response to Edgar Dahl’s ‘The presumption in favour of liberty’. Reprod Biomed Online. 2004;8(3):272-4. 7.Murphy TF. Choosing disabilities and enhancements in children: a choice too far? Reprod Biomed Online. 2009;18 Suppl 1:43-9. 8.Speechley KN, Nisker J. Preimplantation Genetic Diagnosis in Canada: A Survey of Canadian IVF Units. J Obstet Gynaecol Can. 2010;32(4):341-7. 9.Steinbock B. Designer babies: choosing our children’s genes. Lancet. 2008;372(9646):1294-5. 10.Assisted Human Reproduction Canada. Legislation, Regulations and Guidelines. 12 Sept 2011. Available at http://www.ahrc-pac.gc.ca/v2/index-eng.php. Accessed March 8, 2013. http://www.ahrc-pac.gc.ca/v2/index-eng.php 11.Carlson E. Image Archive on the American Eugenics Movement. Available at http://www.eugenicsarchive.org/html/eugenics/essay2text.html. Accessed March 8, 2013. http://www.eugenicsarchive.org/html/eugenics/essay2text.html 12.Kirkey S. Center For Genetics And Society. Embryo testing stokes concern over designer babies. 19 Sept 2011. Available at http://www.geneticsandsociety.org/index.php. Accessed March 8, 2013.http://www.geneticsandsociety.org/index.php 13.Lewis D. Infertility Awareness Association of Canada. Pre-Implantation Genetic Diagnosis Now Available to all Canadians! 2006. Available at http://www.iaac.ca/content/pre-implantation-genetic-diagnosis-now-available-all- canadians. Accessed March 8, 2013.http://www.iaac.ca/content/pre-implantation-genetic-diagnosis-now-available-all- canadians 14.The Congregation for the Doctrine of the Faith. Instruction Dignitas Personae on certain Bioethical Questions. 8 Sept 2008. Available at http://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20081208_dignitas- personae_en.html. Accessed March 8, 2013. http://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20081208_dignitas- personae_en.html Discussions worth Sharing

23. Questions Discussions worth Sharing