The Ethics Weave in Human Genomics, Embryonic Stem Cell Research, and Therapeutic Cloning: Promoting and Protecting Society's Interests

This essay discusses a value-based connection between the emerging technologies of human genomics, embryonic stem cell research, and therapeutic cloning. The analysis presents what is described as an "ethics weave" to highlight the value-based connection between today's major forms of bioengineering. The argument is that human life constitutes the most basic human value that must weave through a sound ethical analysis of life sciences research. The emphasis on the value of human life is evident both in human genomics and embryonic stem cell research, including therapeutic cloning. First, the breakthroughs in human genomics raise many ethical concerns. The death of the first patient in a gene therapy trial in 1999 gave prominence to a profound concern about patient safety in human genomics research. (1) Second, the announcement by President Bush in August 2001, permitting federal funding of research on a limited number of embryonic stem cells, generated widespread debate about the meaning of embryonic human life. (2) The recent experiments in therapeutic cloning by Advanced Cell Technologies have increased the prominence of policy discussion regarding embryonic stem cell research. (3) This essay argues that there is an ethics weave that connects human genomics with embryonic stem cell research based on respecting the value of human life. Respecting human life in each area, however, appears to yield bipolar results. That is, respect for the value of human life in genomics research is articulated in terms of strict regulatory measures to protect patient safety. Whereas, respect for the value of human life in embryonic stem cell research entails a policy trajectory that seems tolerant of the destruction of some human embryos, even if Congress closes regulatory doors to therapeutic cloning. INTRODUCTION To set the scene of the emerging capacity of bioengineering, Part I of the essay presents a case study of Molly and Adam Nash, the first documented medical therapy to combine human genomics and embryonic stem cell research. The story of Molly and Adam Nash provides a glimpse into the relationship between human genomics and stem cell research for the development of future medical therapies. It is in the context of the relationship between these technologies that the ethics weave presented in this essay seeks to highlight a value-based connection between these forms of bioengineering. Part II of the essay indicates that concern with the value of human life in the field of human genomics, especially in the wake of a patient death in a gene therapy clinical trial, has generated a strenuous concern among regulatory bodies over patient safety. Part III of the essay suggests, albeit incongruously, that concern with the same value of human life in stem cell research yields a bipolar result that appears to tolerate the destruction of some human embryos. Respect for human life in stem cell research can yield a result that contrasts starkly with the prominence of patient safety in human genomics. Understanding this incongruity is crucial in order to promote and protect society's interests concerning bioengineering. I. CASE STUDY: MOLLY AND ADAM NASH Molly Nash was a six-year old girl with Fanconi anemia, a rare genetic disorder that prevents the production of bone marrow by the body and can kill at a very young age. (4) A bone marrow transplant from a matching sibling can offer an eighty-five percent rate of success for treating this disease. (5) Because Molly did not have a sibling, her parents decided to have another child, hoping after its birth to use blood from the placenta and umbilical cord for a stem cell transplant for Molly. The parents opted for assisted reproduction and genetic screening from the Reproductive Genetics Institute in Chicago. Using pre-implantation genetic diagnosis, the parents ensured that the new baby did not have the same disease as Molly and that there would be a good match for the transplant. …