Playing God? The Ethics of Genetic Manipulation



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Playing God? The Ethics of Genetic Manipulation Lawrence M. Hinman, Ph.D. Co-Director Center for Ethics in Science & Technology Professor of Philosophy University of San Diego 4/7/2009 Lawrence M. Hinman 1

Overview The Ingredients of Change IVF Human Genome Project PGD Resulting Ethical Issues Individual liberty Safety Hubris Unnaturalness Case Studies 4/7/2009 Lawrence M. Hinman 2

in vitro Fertilization On July 25, 1978, Louise Joy Brown was born--a five-pound 12-ounce baby girl. The first test tube baby, conceived through in vitro fertilization. Conception was detached from sex for the first time. For the first time, we had embryos (fertilized eggs) existing outside the womb. What is there moral status? 4/7/2009 Lawrence M. Hinman 3

The Human Genome Project The completion of the Human Genome Project provides a scientific foundation for genetic screening and manipulation. For the first time, scientists had a map of (most of the) human genome. http://www.nhgri.nih.gov/hgp/ 4/7/2009 Lawrence M. Hinman 4

PGD: Pre-implantation Genetic Diagnosis The ability to test embryos for specific genetic emerged with the development of PCR (polymerase chain reaction) technology, which permitted sex screening to reduce x-chromosome-linked diseases. Now we can test embryos for diseases such as cystic fibrosis, cycle cell disease, and Huntington s. We can also test for a specific kind of dwarfism, even athletic ability. 4/7/2009 Lawrence M. Hinman 5

Resulting new possibilities Conception takes place outside the human body, with pregnancy becoming a planned medical process. Embryos can be screened to decide which to implant, raising issues about eugenics, gender imbalance, etc. Embryos can be left over after some are implanted, which leaves us with questions about their moral status and what should be done with them. Embryos can (and typically are) frozen, after which they can exist in a suspended state for years. Frozen embryos can be donated for adoption to other infertile couples. Frozen embryos can be objects of dispute in law suits when couples divorce. Frozen embryos can be donated for use in research, especially stem cell research. 4/7/2009 Lawrence M. Hinman 6

Arguments in support of genetic manipulation Utilitarian: produces overall a better group of people (eugenics). Libertarian: a matter of individual liberty to decide what genetic enhancements one wants. 4/7/2009 Lawrence M. Hinman 7

Arguments Against Genetic Manipulation Too risky at this time we simply don t know enough to do this safely Violates child s autonomy by choosing a future for him/her Leads to the commodification of human beings selling eggs and sperm. Hubris: Playing God takes on privileged more appropriate for God than human beings Unnatural The giftedness argument (Sandel) 4/7/2009 Lawrence M. Hinman 8

What Kind of Restrictions? What regulation, if any, should apply to genetic manipulation? Several models: The free market/individual liberty model. Individuals should be allowed to do whatever they want as long as they do not infringe on the liberty of others. The government regulation model. Genetic manipulation should not be permitted unless explicitly approved by the government. The Professional regulation model. The oversight of genetic manipulation should be done by professional organizations of physicians and other health care providers. 4/7/2009 Lawrence M. Hinman 9

Choosing Between Life Paths Genetic manipulation is very different from abortion: Abortion is a matter of life or death, of deciding whether a fetus lives or dies. Genetic manipulation is a matter of deciding which life an individual may have by altering the individual s genes; It is a matter of which future the fetus is going to have. 4/7/2009 Lawrence M. Hinman 10

Scenarios Here are some possible cases about issues that can arise through genetic manipulation. 4/7/2009 Lawrence M. Hinman 11

Scenario #1: Designer Babies Imagine that it is possible to decide height, skin color, hair color, eye color, sex and other physical characteristics of a newlyconceived child. Should parents be allowed to change these characteristics if they choose? Will this lead to designer babies? To uniformity? Will this deplete the gene pool? 4/7/2009 Lawrence M. Hinman 12

Scenario #2: Sexual Orientation, 1 Imagine that: - Scientists have isolated the genes that predispose sexual orientation; - You are going to have a child; - Tests have determined that your child will probably be gay. Your doctor asks you: would you like us to alter the genes that predispose toward sexual orientation so that the child will not be gay? Further assume that you have nothing against gays, but believe that overall a gay person will face more discrimination and suffering all other things being equal than someone who is heterosexual. What should you do? Who should be able to decide? 4/7/2009 Lawrence M. Hinman 13

Scenario #3: Sexual Orientation, 2 Imagine scenario #2 with the following changes: - Doctors have determined that your child will have a heterosexual orientation; - You are gay. If the doctor offered to alter the genes so that your child would be gay as well, what should you do? 4/7/2009 Lawrence M. Hinman 14

Scenario #4: Dwarfism, 1 You are pregnant, and a routine test reveals that your child has a particular gene that results in acondroplegia, a form of dwarfism. The doctor asks you whether you want to have the gene altered so that the child s height is normal. What should you do? 4/7/2009 Lawrence M. Hinman 15

Scenario #5: Dwarfism, 2 Imagine the scenario is similar to that given in #4, except that you and your spouse are both dwarfs and the doctor tells you, after a routine test, that your baby will be normal height. A friend, aware that it may be difficult if both parents are dwarfs and the child is not, suggests that you ask that the child s genes be altered so that the child too will be a dwarf. What should you do? 4/7/2009 Lawrence M. Hinman 16

Scenario #6: A Savior Baby A boy has been born to a British couple who want to use stem cells from his umbilical cord to treat an older brother with a life threatening blood disorder. Michelle and Jayson Whitaker's baby, Jamie, was genetically selected while he was still an embryo to be a near perfect match to four-year-old Charlie. The couple went to an American clinic for test tube baby treatment because the selection procedure is not allowed in the UK. Source: http://www.bbc.co.uk/religion/ethics/issues/designer_babies/ Also see Jodi Picoult, My Sister s Keeper Kazuo Ishiguro, Never Let Me Go 4/7/2009 Lawrence M. Hinman 17