“Man is now evermore the maker of what he has made and the doer of what he can do, and most of all the preparer of what he will be able to do next.” (Hans Jonas)

Reproductive Technology Diagnostic technologies Fertility technologies Genetic technologies

Genetics - informat ion  Genes are strings of chemicals long enough to give instructions to the cell, information about which protein to make and how to use them  Genes are located in the nucleus of each cell of each living being  DNA: long, complex molecule, arranged in various clusters of genes called chromosomes  DNA is made up of four similar chemicals (called bases and abbreviated A, T, C, and G) that are repeated millions or billions of times throughout a genome. The human genome, for example, has 3 billion pairs of bases.  A genome is all the DNA in an organism, including its genes.

Human Genome Project  identify all the approximately 20,000-25,000 genes in human DNA,  determine the sequences of the 3 billion chemical base pairs that make up human DNA,  store this information in databases,  improve tools for data analysis,  transfer related technologies to the private sector, and  address the ethical, legal, and social issues (ELSI) that may arise from the project.

Genetic Diseases Monogenic defects: Cystic fibrosis Juvenile diabetes Down’s syndrome Tay-Sachs Huntington’s disease Sickle-cell anemia Polygenic defects: spina bifida, anencephaly

Ethical concerns in genetics 1. Genetic testing 2. Genetic screening 3. Genetic therapy 4. Genetic enhancement

Suppose you are living twenty- five years from now. Suppose that among the advancements in genetics is the ability to screen individuals for particular genetically caused or influenced disorders and conditions.

Would you want to have such information? If yes, what kind of information would you want to have access? Would there be any information that you would not want to know? How much would you be willing to pay for such a screen? Do you think that society should pay for anyone’s screening? Why or why not?

Genetic Testing Genetic tests are designed to identify a problem after symptoms have appeared They can also predict future diseases They can identify healthy people who are carriers of disease-prone genes that will or may affect their offspring Tests can threaten our privacy The genetic testing of one individual can threaten the privacy of other individuals Genes are the “holy grail” we are nothing but our genes

Testing Children Pressures are mounting for prognostic testing of children without symptoms to detect their status as carriers or as subjects of a genetic disease that might develop later in their lives Biotechnology companies are developing commercial tests Will the genetic testing be a net benefit for children who cannot consent?

Prudential reasoning suggests that genetic testing in the absence of any threat to the child in childhood should be postponed until the child has enough maturity to make the decision for herself.

Testing Adults for Genetic Predispositions Genetic tests showing a higher degree of likelihood for some forms of Alzheimer’s disease, colon cancer, ovarian cancer, and breast cancer now exist. E.g.: testing for BRCA genes, testing for carrier status, How can we engage in ethical decision-making about genetic testing designed to identify a predisposition to a disease? Consider that the decision to test or not to test can profoundly affect the quality of life.

If it were possible to make genetic alterations, what characteristics would you want your children to have?

What would the world be like if people had only those characteristics?

Genetic Technologies Gene therapies Gene enhancement

Types of Human Gene Transfer THERAPEUTIC Intent to correct or prevent some genetic defect that causes disease NON-THERAPEUTIC Concerned with improving various genetic traits of the patient or permanently engineering the genetic endowment of the patient’s future generation

Therapeutic Gene Transfer SOMATIC CELL TRANSFER THERAPY - a genetic defect in a body cell of a patient could be corrected by using various enzymes to splice out the defect and to splice in a healthy gene GERM-LINE GENE TRANSFER THERAPY - either a genetic defect in the reproductive cells of a patient would be repaired or a genetic defect in a fertilized ovum would be corrected in vitro - Affects future children and modifies sequences in a whole line of future generations

Nontherapeutic Gene Transfer SOMATIC ENHANCEMENT ENGINEERING - A particular gene could be inserted to improve a normal trait GERM-LINE GENETIC ENGINEERING - Existing genes would be altered or new ones inserted into either germ cells or into a fertilized ovum -

How would gene therapy work?

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

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 Playing God—takes on privileged more appropriate for God than human beings Unnatural

Risks There is much that we do not understand about human genes. Altering genes may result in changes that we do not expect. If these changes can be passed down to future generations, there is a possibility of catastrophic results. We may create pressure for people to use these techniques.

What’s Natural? Genetic manipulation strikes many people as profoundly unnatural, against the natural order and (sometimes) against God’s order. Is this merely a subjective feeling, shared by some but not all, or does it have some stronger foundation?

24 Playing God? Some critics maintain that altering genes is “playing God.” What is the force of this objection? The argument would be that altering genes can change future generations to an extent never before possible.

25 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 government should ban all attempts at genetic manipulation. Genetic manipulation is too hazardous and should not be permitted.

Germ-line genetic alteration Germ-line genetic alterations could occur either while the ova and spermatozoa are separate cells or in early embryos. Alterations to cells in early embryos are germ-line alterations because the cells are not yet differentiated (not yet functioning as specific cells, such as brain cells, blood cells, etc.) Any alterations made in the undifferentiated cells of an early embryo will in all that cell’s daughter cells, and some of the altered cells will function as germ cells. Thus, a change in the genome of the embryo affects its future germ cells.

Would you advocate moving forward with germ-line genetic alteration? Under what circumstances and from what reasons would you consider it morally permissible?