designer babies the future of reproductive technology technology. eugenics. design discussions worth...
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Designer BabiesThe Future of Reproductive Technology
Technology. Eugenics. Design
Discussions Worth Sharing
Outline
• Background• Who is it for• Canadian statistics and regulations• Discussions• Reflections• Future directions• Summary
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Objective
• General understanding of preimplantation genetic diagnosis (PGD) technology
• Gain a wider perspective on cultural, religious and social implications
• Think actively, discuss openly, participate!
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Background
Designer Baby –
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“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”
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 stimulation2) Egg retrieval3) Egg fertilization4) Embryo development 5) Embryo transfer
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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
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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
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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
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DiscussionsControversies
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Discussions
• Selecting for a disability
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“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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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
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• 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
Discussions
• Adam Nash• One of 15 embryos• Saved his sister
suffering from Fanconi’s anaemia
• Great achievement or unethical?
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Reflection
Religious, Cultural, Societal Impacts
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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…”
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Cultural Impacts
• India– Prefer boys
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• China– Country side Prefer boys
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”
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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?
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Summary
• Science and technology is always evolving• No right or wrong views• Religious, cultural, societal influences• Keep an open mind
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“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.com
References1. 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, 2013.11. Carlson E. Image Archive on the American Eugenics Movement. Available at
http://www.eugenicsarchive.org/html/eugenics/essay2text.html. Accessed March 8, 2013.12. 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, 2013.13. 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.
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.
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