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Designer Babies and Genetic Engineering
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What is a Designer Baby? A baby whose genetic makeup has been artificially selected by genetic engineering to ensure the presence or absence of particular genes or characteristics Ethical Issue: Should couples be given the right to alter their children’s genes to their own preference and liking? In 2004, this colloquial term made the transition from science fiction movies to the Oxford English Dictionary, where it’s defined as…
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Real-Life Situation In October of 2000, Adam Nash was the world’s first designer baby born by pre-implantation genetic diagnosis (PGD) PGD refers to screening procedures performed on embryos to check for genetic disorders prior to implantation and pregnancy Combined with in-vitro fertilization (IVF), a process by which egg cells are fertilized by sperm outside the womb Embryos grown to the eight-cell stage and are checked for genetic disorders It’s a major treatment in infertility, but is now being used for other reasons Outside the womb. This is done by controlling the ovulatory process: doctors remove the egg from the ovaries & let sperm fertilize it in a fluid medium. Genetic disorders. Only the healthy embryo is implanted into the mother’s womb
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Real-Life Situation His parents were both carriers of Fanconi Anemia and passed this genetic disorder onto their daughter, Molly To save Molly, a bone marrow transplant was needed Doctors fertilized several of Adam’s mother’s eggs, but only implanted the one that was both genetically healthy and a match as a donor This means the other embryos that could have grown into human beings were killed Now, Molly is healthy and has been given a second chance at life His parents were both carriers of a gene mutation that led their first daughter, Molly, to be born with a rare and devastating genetic disorder known as Fanconi Anemia Transplant was needed. Her parents couldn’t find a suitable match, so they had to make their own child. Of course, they couldn’t do it the old fashioned way and the only option left to them was PGD
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Where Are We HEADED? A resent U.S. survey suggest most people support the notion of building a better baby when it comes to eliminating serious diseases. ALL PARENTS want a healthy baby. Will that be enough?
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Designer Babies Today To date, genetic technology has only been used to treat serious disease in children Discoveries about the influence of genes on human traits opens the possibility of transferring these techniques to human beings Developing technology makes it possible to alter anything from gender to disease, and eventually appearance, personality, and IQ Some believe that parents will inevitably want to choose their children’s genes, thus creating designer babies …on human traits, such as susceptibility to disease, IQ, and athletic ability…
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Advantages Allows couples who can’t conceive normally to have children
Allows couples to balance gender in their families Genetic screening reduces the baby’s chances of being born with a serious genetic disease Increases the likelihood of a healthy baby Reduces chances of miscarriage Reduces chances of termination due to disorder Can be used to save lives
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Disadvantages Moral and ethical concerns: Social concerns:
Too much like playing God Killing embryos that could have grown into humans Social concerns: High cost leads to gap in society Could lead to eugenics: individuals are “bred” or designed to suit social preferences Genetically enhanced people may start to feel superior to those who haven’t been enhanced Such groups of people may become prejudiced against one another due to a feeling of lost common humanity with non-enhanced people …gap in society and only wealthy people will be able to afford it. This could cause discrimination against those with disabilities to greatly rise …social preferences, such as above average height or increased intelligence
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Disadvantages Safety concerns:
Can lead to ovarian hyper-stimulation syndrome (OHSS) Unskilled lab technology could damage embryo during biopsy The removal of cells from eight-cell embryos has implications for the well-being of people created by PGD
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For or Against Designer Babies?
In a recent U.S. survey of 999 people who sought genetic counseling, a majority said they supported prenatal genetic tests for the elimination of serious diseases Survey conducted by researchers at the New York University School of Medicine
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For or Against Designer Babies?
Survey results: 56% supported using genetic tests to counter blindness 75% supported using genetic tests for mental retardation 10% of respondents said they would want genetic testing for athletic ability 10% voted for improved height 13% backed the approach to select for superior intelligence
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Designer Babies at a PRICE
A recent ad in a top college newspaper offered $50,000 for an egg from a bright, healthy young woman. Recently a couple with 2 children decided they wanted a Designer Baby at the cost of $9,000. The parent becomes the architect and the child becomes the ultimate shopping experience. Will only the rich be able to afford these babies?
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Financing Available
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Designer Babies at a Price
Would you buy me?
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Seven Steps in Ethical Decision Making
What is the ethical dilemma? What are the facts? Who are the stakeholders? What are the options? What should I do? Is it justified? How could this ethical problem have been prevented?
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Step #1: What is the ethical question?
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“It would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved … and (ii) there is broad societal consensus about the appropriateness of the proposed application.” Hosted by the US, UK, China= global leaders in gene editing
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Why use science to create babies that are healthier and disease free but babies who have extraordinary traits?
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Step #2: What are the facts?
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Pros of Genetically Modified Babies
Eliminate illness and disease in unborn child: Scientists remove bad genes by “germline” Example of diseases that would be eradicated: Cystic fibrosis Huntington’s disease Tay-Sachs disease
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Pros of Genetically Modified Babies
Longer life span: Future generations will have a better quality of life Advancements in genetic engineering: Reverse basic causes of body’s natural decline Adaptation Guarantee survival of the human race Medical advancements
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Cons of Designer Babies
Genetic Diversity Identical genomes, the population as a whole will be susceptible to virus or disease. Over Population Not enough resources on earth New Diseases Rising It may fix one disease or mutation and cause other diseases or mutations that could make the person sicker or even kill them Too many words!
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Cons of Designer Babies
Safety Issues Unknown Consequences of Viral Genes in the Human Body God The belief that god should have ultimate power and we should not be altering nature Price Only the rich can offered it Lack of Regulations No current laws or guidelines
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Step #3: What is the perspective of the stakeholders?
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Primary Stakeholders The Family
Parents have the intention of preventing the passing of genetic diseases to future generations Existing children may benefit Physicians and other healthcare professionals Duty of nonmaleficence Government Regulation of laws
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Secondary Stakeholders
Society Social changes Unpredictable long-term effects Conservative and/or religious groups HIM Professionals (Health Information Management) Interest in the safety and security of the sensitive information
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Step #4: What are the options in the case?
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Alternatives for Designer Babies
Choosing a mate/partner. Sperm donor. Mother nature takes its course.
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More Information on Genetic Engineering
Other nations outlook on GE. Center for Genetics and Society: geneticsandsociety.org Website: Live Science Action Bioscience Center for Genetic and Society New Scientist
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Step #5: What should I do?
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Worldwide Views Human embryo modification is banned/ discouraged in over 40 nations, excluding the United States. China is criticized as the “Wild West’ of genetic research. United Kingdom’s bill allows regulated scientific research in human genetic modification. “Three parent” babies still discussed as an ethics issue.
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What should I do? Weigh the unknown long term consequences compared to the common alternatives. Consider the economic separation (affordability). How will the child’s life be impacted? We are effectively creating our own evolution course.
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What should I do? Are we prepared for this “break-though” as a community, nation, and worldwide? Just because we’re capable of doing something, should we do so?
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Step #6: What justifies your choice?
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Is it justified? Subjective per family
Human Genome Mutation will be passed down for generations The justification for genetic mutation through artificial practices will be subjective per family. What is fair to them may be different from other perspectives. HGM will be passed down for generations and may cause other ethical decisions for the future.
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Step #7: How could this ethical situation have been prevented?
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It can’t. Medical advances will continue to happen.
The focus will be on how it will be regulated. Video:
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