Genetic Issues We are at the dawn of a new age in medicine Genetically engineered therapy will personalize medicine Diagnosis will precede disease This will mean a new “specialty” in medicine

Genes It is thought that less than half of diseases have a genetic component to their causation and cure The interaction between genes, proteins and enzymes is complex Gene mapping can be done for many illnesses now, Gene genealogy is also done now

Issues Therapy Enhancement Parental rights and responsibilities Confidentiality Discrimination and cost Prevention

Therapy Somatic Germ line

Somatic Cell Therapy Injection of material into existing person Risk of transmission errors and viral strain mutation Allergic reactions Fulfills the role of medicine

Germline Therapy Replaces the genome completely OR replaces genes that are defective Potential to cure by making disease not exist Potential to enhance Issues of power, justice

Genetic Issue Genes may not control behavior Behavior causes and cures diseases Multi-factorial causation means that the “cure” from a genetic standpoint may only be partial

Resource Allocation Can we make this available without regard to social difference and income In the present system, probably not Cost of the system were it to be “fair” would be staggering

Enhancement Cheating? Medicalizes social issues Available to those who can afford it— developed world advantage? Second class citizens Super humans

Parental rights Can choose the sex of your child now Does the child forgone have any rights? What about the child with a defect? Potential parent has the power to decide for child if gene therapy occurs—should there be an unbiased third party as representative to for the child

Confidentiality Who gets to know your genetic information? What can they use it for? Will it cost you more for insurance if you have a potential for genetic disease Can insurers refuse to take you? Pay for certain diseases?

Clones What for Should they have a purpose? Can we limit that purpose? Who pays? Who gets them?

Prenatal diagnosis Right to life issue Parental rights versus those of the living fetus Is death of the fetus abuse?

Procreative Liberty Freedom to avoid procreation Freedom to procreate Both rights exist today Birth control and abortion Non-coital procreation protected?

Moral Arguments against Liberty Theological Demographic Cultural Discriminatory All external control of moral and social decisions that have consequences for the individual and for society

Stem cells and research The therapy, enhancement argument Choice for the fetus? “not used” argument

Asexual Reproduction When we have a choice not to have babies the regular way, will that way disappear? Is the embryo a person if not the product of coitus? Who is their parent? Does the state become the parent? 1984

Genetic testing and therapy Can we and should we control these in the interest of fairness and justice In the interest of equal access Cost and power issues

Question A child has retinoblastoma—a childhood cancer of the eye with a uniformly poor outcome from standard therapy—which has metastasized to multiple organs. The parents have been told the child is terminal. A research protocol using targeted somatic cell therapy is available. What consent should be presented to the parents? The child? If the protocol is 100% effective in cure on the first 14 patients what considerations should be used to stop the trial early?

Summary Huge social and ethical issues Technology pressing the limits of human thought Must work out the details before the the therapy is fully available