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Informing Reproductive Choice? Prenatal Genetic Testing in the 21st Century: Disease Advocacy Organizations ’ Perspective Stanford Center on Law and the Biosciences and the Stanford Center for Integration of Research in Genetics and Ethics May 29, 2012. Sharon F. Terry, MA President & CEO
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Informing Reproductive Choice?Prenatal Genetic Testing in the 21st Century:Disease Advocacy Organizations’ PerspectiveStanford Center on Law and the Biosciences andthe Stanford Center for Integration of Research in Genetics and EthicsMay 29, 2012 Sharon F. Terry, MA President & CEO Genetic Alliance
133 Multiple Choice Respondents 120 Open Ended Respondents
Drawbacks: Lack of access and knowledge of NIPD could reduce its usefulness May provide unnecessary anxiety to expectant parents for conditions that may or may not affect the baby There will be false sense of security, this has a long way to go, will be like 23andMe in the meantime. Not interested, even though child with CFC Syndrome. Will increase abortions. Benefits: Although test more expensive, it is not much more expensive and will become less expensive. “Be used madly by society to terminate nonperfect children.”
Drawbacks (open ended) (N = 33) “Anti-abortion charities going wild.” “The technology will…deprive us of a badly needed way to temper our own human immodesty. Imperfections remind us.”
Benefits (open ended) (N = 34) “Fewer dead healthy babies”
Advocacy Leadership Deal Daily with Fetal Chromosomal Abnormalities …there are lots of opinions, varied as you might surmise. Differences largely derive from perceptions/understandings of how fatal the condition is in 1st year of life and moral/political positions relative to the prolife/prochoice divide. 2010 Victoria Miller, Trisomy 18 Foundation
So what is different about this? • Service Delivery? • Technology? • Emerging Meaning? • Social Issues? 2010
General Issues • Is the whole child ‘out of range’? What is the range? • Social sensibilities about milder syndromes – who is advocating for challenged citizens? NIMBY • Trivialize termination – who are we when that is easy? • No damaged goods permitted • Striving for the right fetus – every fetus on ‘trial
What is Genetic Alliance doing? • Understand the perspectives of consumers • Focus groups • Surveys • Congenital conditions project • Downs syndrome, spina bifida, dwarfism • Participant-centric outcomes • While ‘bending the cost curve’ • Building interactive engagement tools • Baby’s First Test (babysfirsttest.org) • Genes in Life (genesinlife.org)
Elizabeth and Ian diagnosed with pseudoxanthoma elasticum (PXE) 1994 2012 Elizabeth: PXE International ED Ian: Webmaster
“While you strive to rid the world of genetic diseases, you need to know that we strive to live with genetic disease. What you define as disease is part of us, is part of who we are and how we see ourselves. We know that even if we are blind at 30 years old, we are still whole and still a complete part of this world. You don’t understand the vision this disorder has given us: a view of the purpose of life that you can’t understand as long as you fight disease. When you accept that our being affected by PXE is a gift, that we would not otherwise have this opportunity to know suffering and the strength it brings, then you will understand your own purpose much better. Broadening your definition of health and disease will free you to see what we see – to understand the meaning of life.” Elizabeth Terry, age 15
