1. 1 Genetic and Non-Genetic Enhancements Jan C. Heller, Ph.D. Office of Ethics and Theology Providence Health & Services

2. 2 Presentation Outline A working definition –Background of the term “enhancement” –Current uses The “mechanisms” of genetic enhancement: Will it Work? Review of the ethical issues Relevant ERDs Case discussion and questions

3. 3 Background: Types of Genetic Interventions W. French Anderson’s Proposal (mid-1980s, early 1990s) –Somatic cell gene therapy (affects patient only, except inadvertent germ line modifications) –Germ-line gene therapy (now called IGM: inheritable genetic modifications; affects embryonic “patient” and his/her future children) –Genetic engineering (development of new human traits, involving multiple genes and environment) –Genetic enhancements (interventions to improve performance, function, or appearance beyond that which is necessary to sustain or restore good health)

4. 4 A Working Definition (NIH) Genetic enhancement –The transfer of genetic material intended to modify non-pathological human traits Non-genetic enhancement –The use of non-genetic interventions to make someone not just well, but better than well, by optimizing attributes or capabilities

5. 5 Examples Genetic –Size (height, strength, speed) –Sleep less –Aging slowed –Memory improvement –Aggression –Cognitive ability –Moral improvements LeRoy Walters Non-Genetic –Cosmetic surgery –Bone surgery for height

6. 6 Genetic Enhancement: Will it Work? “Success in gene therapy depends on the efficient delivery of the correct gene to the correct cells in the correct tissue. Once that’s accomplished, you still need to make sure the gene gets to work and continues working for the life of the cell. This is not an easy task.” –Un. of Utah, Genetic Science Learning Center (emphasis in original)

7. 7 Genetic Enhancement: Will it Work? Same could be said for genetic enhancement… –To alter complex physical or behavioral traits, we’d have to know where and how to deliver the appropriate genes, and how to turn them on or off appropriately –For most traits, this means delivery to all 100 trillion cells –Probably not possible in children or adults, so we would be forced to use germ-line procedures and insert material into sperm or eggs, or a very early stage embryo

8. 8 Genetic Enhancement: Will it Work? This transforms an somatic enhancement question to one of altering germ-lines –A much more ethically problematic issue –Changes passed to embryo and his/her offspring But, what this does indicate is how advances in therapeutic interventions (both genetic and non- genetic) could easily move (slide?) into use for enhancements… –E.g., Epo –A common problem of “unintended consequences”

9. 9 Review of Other Ethical Issues Genetic vs. non-genetic enhancement: Is there a moral difference? –For somatic cell gene therapy, should it ever become feasible, probably not Enhancements are not passed to off-spring –For germ-line alterations, there might be a moral difference, since future generations are potentially affected But, would this be bad or wrong in all cases?

10. 10 Review of Other Ethical Issues Enhancements are judged as such by reference to some standard, e.g., normal heights –How do we judge the standard, and the long- term effects of it for individuals or the human species? Statistical and normative notions of “normal” Would we be creating unfair advantages for those who could afford the enhancements Would we be “playing God”?

11. 11 Review of Other Ethical Issues Is the category of enhancement coherent? –Why cosmetic surgery generally acceptable while somatic gene alternations for, say, cognitive ability (if this could be done safely and effectively) generally viewed as unacceptable? –What exactly makes enhancement ethically problematic (i.e., what are the “wrong making” characteristics of an action)?

12. 12 Relevant ERDs ERD, #38: …[reproductive] assistance that does not separate the unitive and procreative ends of the [marital] act, and does not substitute for the marital act itself, may be used to help married couples conceive.” ERD, #51: Nontherapeutic experiments on a living embryo or fetus are not permitted, even with the consent of the parents…

13. 13 Case Discussion Researchers have found that early interventions (in infancy) with mentally and physically handicapped children can yield greater functionality later in life than if we wait until school age. –Is this enhancement or therapy? –Suppose we could safely alter their genes after birth to produce the same effect? Would it be right or wrong to do this? Why?

14. 14 Case Discussion Researchers have found that good diets and early exposure to group educational experiences for children can increase their success later in school and in life. –Is this enhancement or therapy? –Suppose we could safely alter their genes after birth to produce the same effect? Would it be right or wrong to do this? Why?

15. 15 Case Discussion Four-year-old Jimmy is a high-achieving little boy with Down Syndrome. He is a healthy child, who does not suffer from the health complications that sometimes accompany the syndrome, and appears happy and cheerful. The other little children don’t seem to notice that he is any different, but his parents are concerned that this will change as they grow older. There is nothing they can do, they realize, to change the fact that he will always be slower than his peers, but they wonder if they can’t do something to erase the distinctive facial features of Down Syndrome that set him apart. They fear that these features will make his classmates and teachers automatically assume that Jimmy has a low IQ, and that they will not play with him, and will leave him out of activities in which he could, in reality, take part successfully. They hear about a new surgical procedure to trim his large tongue and make his eyelids look “normal.” They believe that this will give him a better chance.