<< Previous Section | < Previous Page | Next Page > | Next Section >> Bibliography (page 6 of 8) Merz, J. F. (1999). "Disease Gene Patents: Overcoming Unethical Constraints on Clinical Laboratory Medicine." Clin Chem 45(3): 324-330.       Those who control patents on genes that relate to specific disorders or susceptibilities are maintaining monopolies over genetic testing for those genes. This results in diminished availability of the tests and monopoly prices. This interferes with the ability of physicians to diagnose and treat their patients. Unless the patent office requires compulsory licensing of genetic patents that it grants, this situation could become much worse as noted by the American Association for Clinical Chemistry in 1999. This is balanced by the need to maintain very high testing standards for complex assays. I do not believe that much progress has been made to make testing more available or cheaper. Morella, C. A. (2001). "Stem Cell Research Needs United Support." Science 293(5527): 47b-.       This letter by Congresswoman Morella indicated that the scientific community would have to unite and lobby hard to get their views on stem cell research heard and listened to. Motulsky, A. G. (1999). "If I had a gene test, what would I have and who would I tell?" Lancet 354(suppl I): 35-37.       This brief paper by one of the leaders in genetics over the twentieth century asks a series of critical questions about genetic screening. He points out, for example that testing for something for which there is no treatment or effective preventive seems inappropriate. He also notes that non-genetic tests for susceptibilities are sometimes more effective in that many genes could produce the same adverse physiological state. While it doesn't deal directly with research ethics, it is worth our attention. Noguchi, P. (2003). "Risks and benefits of gene therapy." N Engl J Med 348(3): 193-4.       The author, from the FDA, reviews leukemia, the serious adverse event associated with gene therapy for combined immunodeficiency disease, a lethal genetic disorder of the immune system. After a special committee review the study was limited to patients failing bone marrow transplantation, but with the subsequent identification of more cases the trial was stopped completely. This paper gives the arguments for continuing the study in a limited way. Nowlan, W. (2002). "HUMAN GENETICS: A Rational View of Insurance and Genetic Discrimination." Science 297(5579): 195-196.       The author, an insurance executive, give arguments to reassure the body politic that insurance companies are motivated to insure people not to deny them insurance. They further should have the right to charge in accordance with the appropriate actuarial risk. His most cogent argument is that insurers can't insure on the basis of genetic tests that will not lead to a disease for years. Since most individual health insurance policies last only a few years, the companies have little motivation to deny coverage unless there is established illness. He indicated that states have enacted numerous anti-discrimination laws, and that he believes that these are counterproductive. This "other view" is well worth reading because no matter what the future may bring, there is little evidence of insurance discrimination to date. Okie, S. (2005). "Stem-Cell Research -- Signposts and Roadblocks." N Engl J Med 353(1): 1-5. Parens, E. and E. Juengst (2001). "Inadvertently Crossing the Germ Line." Science 292(5516): 397-.       This editorial reflects on the successful pregnancies resulting from transfer of ooplasm from donors to eggs of women whose infertility was due to ooplasmic defects. This process resulted in mitochondria and mitochondrial DNA being transferred. The authors worry about the lack of controls over non-federally funded inherited genetic modifications. Reich, J. G. (2002). "EMBRYONIC STEM CELLS: The Debate in Germany." Science 296(5566): 265-. Robinson, G. E. (2004). "GENOMICS: Beyond Nature and Nurture." Science 304(5669): 397-399. Rothenberg, KH, Terry, SF. (2002) Before it's too late - Addressing Fear of Genetic Information. Science,297:196-7.       The fears of uninsurability and employment discrimination are widespread as the possibility of meaningful genetic screening approaches reality. While a melange of laws have been passed in state legislatures, this national problem needs a uniform national solution they claim Sade, R. M. (1994). "Issues of social policy and ethics in gene technology." Methods Find Exp Clin Pharmacol 16(7): 477-89.       Technical developments in the last ten years have made possible mapping and sequencing of the entire human genome, along with the possibility of treating genetic disorders by manipulating DNA. A variety of issues regarding potential uses and abuses of these technologies have become apparent. They relate to both genetic screening and gene therapy. Problems facing individuals and their families mostly revolve around rights of self-determination and of confidentiality. Health care professionals will need to design optimal systems to provide genetic counseling and to protect confidentiality of DNA data bases. Society and social institutions will need to develop policies and laws that protect the privacy of individuals whose DNA is stored in data banks. Patenting of the results of gene research remains controversial internationally. Moreover, there is concern in many quarters about society's potential abuse of gene technology for eugenic purposes. Gene therapy is now a reality. There is little disagreement on the use of gene therapy to treat genetic diseases in individuals by somatic cell therapy. There is much controversy, however, over the use of germ-line cell therapy. Gene technology has contributed to the growth among a small group of influential people of the Post-Modern Movement, which is strongly antiscience and antitechnology. This movement may pose a long-term threat to future technological advances and should not be ignored. There is much outside of the laboratory that scientists, particularly molecular biologists, can do to assure a secure place for science and technology in our culture. << Previous Section | < Previous Page | Next Page > | Next Section >> Chapter 7 Quick Links Genetics and Stem Cell Research Genetics Human Embryonic Stem Cell Research Bibliography Chapter 7 Download (PDF)