here - Center for Genetics and Society
Transcription
here - Center for Genetics and Society
Genetically Modified Babies? Human Biotechnologies, Immediate Threats to Children, How We Can Save Childhood Enola Aird, Mothers for a Human Future Marcy Darnovsky, Center for Genetics & Society Global Summit on Childhood, April 11 2014 Science fiction. Science fact. Science fact? Recent headlines Three-parent IVF is here, and there’s nothing to fear - Al Jazeera America FDA weighs risks of 3-person embryo fertilization – USA Today Some beneficial uses of genetics IN HEALTH CARE • Carrier testing for serious inherited diseases • Newborn screening for treatable conditions • Diagnosis aids in difficult childhood cases • Confirm inherited serious & treatable diseases • Emerging: pharmacogenomics, testing tumors IN CRIMINAL JUSTICE • Exonerate the falsely accused • Match crime scene DNA against a suspect New kinds of gene tests Very early fetal gene tests Extensive newborn screening Testing kids for traits including athleticism Direct-to-consumer gene tests Urgent questions What do these genes mean? “Incidental findings” Genetic privacy / discrimination Who decides, who consents? Selecting for / against traits How does this change children and childhood? Early fetal gene tests Sex selection in the US Genetic testing for “athleticism” NY Times: “Born to run?” ATLAS™ BENEFITS • Gives parents and coaches early information on their child’s genetic predisposition for success in…speed / power or endurance sports. • Safe to use on the youngest of athletes DTC gene tests for kids An immediate threat What should it be called? • Three-parent babies • Three-parent IVF • Three-person embryos • Mitochondrial manipulation • Mitochondrial replacement • Mitochondrial donation • Oocyte modification “3-person embryos” Not safe FDA panel chair Evan Snyder “not enough data in animals or in vitro to move to human trials…concerns [about] preclinical data…also the basic science” FDA panel member David Keefe “displays of technical virtuosity should not blind us to potential hazards nor to overestimate the scope of their applicability” Human experimentation Doesn’t “save lives” No claim that it would help people who are sick or suffering; a risky experiment for creating a new child. But media reports say: “This treatment would save children's lives – so why won't the government allow it?” Polly Toynbee, The Guardian, 2/10/14 No large demand • 1 in 5-10,000 have some kind of mitochondrial disease • 85% have mutations in nuclear DNA – they are not candidates • Most of the rest produce some eggs with low levels of mutation – why not screen embryos? • UK advocates estimate 10 families per year Alternative options • Adoption • Third-party eggs • Prenatal gene test • Embryo screening The world we want to avoid International law • 40+ countries prohibit inheritable genetic modification • Every country that has ever considered it has prohibited it What you can do • Email UK authorities before April 25 to share your concerns. Sample message and contact info: www.geneticsandsociety.org/GMbabies • Help us spread the word. Contact us about briefings for organizations with which you are affiliated. Mothers for a Human Future http://mothersforahumanfuture.com/ Center for Genetics and Society geneticsandsociety.org biopoliticaltimes.org