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.
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.
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. On August 29, 2000, baby Adam was born. A few weeks later after further screening, his six-year-old sister received a transfusion of stem cells from his umbilical cord and placenta. Both baby Adam and Molly flourished. (6) This therapeutic intervention was the first recorded experiment that merged the technologies of genomics (via genetic diagnosis) and stem cell research (via the transplant). (7) The case of Molly and Adam Nash amply demonstrates how human genomics and stem cell research can work together.
But the therapy was not without ethical controversy. For example, to undertake pre-implantation genetic diagnosis, fifteen human embryos (at eight-cell stage, when one cell typically is removed for genetic testing prior to implantation in the mother's womb) were created via in-vitro fertilization. (8) Some of the embryos were discarded--only baby Adam was born. The ethical question concerns the status of the human embryos that were created in order to select an appropriate match for treating Molly, especially with regard to treating them as persons having rights or property for medical research. (9) As bioengineering develops in human genomics and stem cell research, similarly complex ethical questions will increasingly arise. Hence, the ethical discourse that is likely to weave through the new science and technology of life sciences research should inspire policy debates that both promote and protect the interests of society.
This essay addresses prominent policy issues in bioengineering today and argues for a value-based connection between apparently disparate specialties. This connection constitutes an "ethics weave" that urges a more coherent policy approach for the nation in general and the scientific community in particular.
The science of genetics examines mechanisms that enable biological traits to pass down through generations and ultimately to be expressed in individuals. (10) A genome is the sum total of genetic information contained within the cells of a living individual. Our human genome is contained within the nucleus of every bodily cell. Organized in the form of a spiraling double helix, deoxyribonucleic acid (DNA) resembles a twisting rope ladder. The rungs or steps are composed of a series of four bases, A, T, C, and G (Adenine, Thymine, Cytosine, Guanine) that pair up in a regular manner (A & T; G & C). The long thread of DNA with corresponding base pairs folds around proteins in a set of tightly packed coils. The human genome is a single molecule, distributed over our twenty-three chromosomes. That is, over the length of human chromosomes there are approximately three billion base pairs (rungs) of chemical letters. (11) Mapping the human genome requires deciphering and arranging these three billion chemical letters of DNA in the correct sequence across our twenty-three chromosomes. (12) This assembly and analysis of the human genome--so tiny in size, yet almost limitless in its potential for health--constitutes an astonishing breakthrough in modern science and technology.
The history of genetic science is fascinating. Modern genetic science can be traced back to Andreas Vesalius, whose study on anatomy, published in 1543, inspired subsequent breakthroughs in anatomy and physiology. (13) Most people recognize the founder of classical genetics to be Gregor Mendel, the monk whose experiments with peas in the 1860s provided a framework for understanding the laws of heredity, i.e., that somatic traits are determined by specific factors (later called genes) that are possessed in pairs and inherited in single copies from parents. Additionally, Mendel was able to show that some genes are dominant (able to work if only a single gene, rather than a pair, is present) while others are recessive (a paired set of genes is required for a trait, or disease, to be present). (14) By 1940, the basic laws of heredity had been worked out. (15) The modern era of genetics began in 1953, with the discovery by Watson and Crick of the structure of DNA as a molecule whose intertwined strands constitute a double helix. (16) Building on the earlier discoveries of molecular genetics, the discovery of recombinant DNA (rDNA) shifted the research focus from examining the effects and nature of the genetic code to developing tools to manipulate DNA--leading to the Human Genome Project (HGP). (17) The HGP began officially in 1990, with an international consortium of scientists supported by the Wellcome Trust, a medical foundation in Great Britain, and by the federal government of the United States. (18) To support the HGP in their efforts to map and sequence the human genome, Congress allocated more than three billion dollars over the subsequent fifteen years. (19)
Several goals were established for the Human Genome Project: (20) to establish high-resolution genetic and physical maps of the humane genome and the genomes of other select organisms; to develop the tools and capabilities to store, distribute, and analyze the information gathered; and to develop programs to address the ethical, legal, and social implications of the effort. (21) Three percent of HGP funding was allocated through the newly created office for Ethical, Legal, and Social Implications (ELSI). By the end of the twentieth century, approximately forty million dollars had been disbursed via ELSI. (22) The goals for ELSI focused upon influencing policy development in the following arenas: privacy and fairness in the use of genetic information; the clinical integration of new technologies; and public and professional education on genetic research issues. (23) Here we see the seriousness given to ethics and policy discourse in this new scientific landscape.
Although originally intended to be a fifteen-year effort, the completion date for a draft of the human genome was accelerated significantly, and on June 26, 2000, a first draft was presented at a White House ceremony. (24) Later, in February 2001, two competing groups...