Modern genetics poses some of the most significant ethical problems that science has ever faced. As a result of recent advances, scientists are now able to engineer living organisms with genes taken from unrelated species. Proponents of genetic engineering claim that this technology is a natural continuity of older breeding practices. This is, however, clearly not true. The new genetic technology is a human intervention that must not be confused with any previous intrusions upon nature; like animal and plant breeding for agricultural purposes, or the induction of mutations with x rays in laboratories. All earlier procedures worked within single or closely related species while the genetic engineering of today is unprecedented in that it allows human beings to direct the crossing of species barriers in entirely new ways. Though scientific morality up to now has been to proceed without restriction to learn all we can about nature, our new genetic knowledge requires the careful assessment of all associated ethical issues if its application is not to prove unwise or dangerous. Opinions about modern genetics are divided at this time, with some emphasizing the promised benefits and others raising severe doubts and questions about the social and environmental implications.
Apart from the possible risks arising, for example, from the unrestricted release of genetically altered organisms, the fundamental ethical question is whether the applications of modern genetic knowledge respect the intrinsic rights of living creatures. In both science and industry, the predominant attitude towards life appears to be based on philosophies of instrumental values while intrinsic values are considered less important, with the result that living creatures are assessed in terms of their potential use. In 1971, the United States government issued the first patent on an organism, a genetically engineered bacterium for cleaning up oil spills. Today large biotechnology companies hold patents on genetically engineered plants, animals and also on human genes. The push to patent genetically engineered organisms raises the basic question as to whether it is proper to claim ownership over living organisms or their parts? A patent is a kind of license granted by a government to inventors giving them the rights to stop rivals from making, using or selling their inventions without permission. To receive a patent, an invention must be new, innovative and have some practical application for human activity. It cannot simply be a discovery. Opponents of gene patenting say that genes are pure discoveries, while supporters argue that genes are patented together with inventive descriptions of how they can be used. Holding a patent on a gene gives the holder control over its commercial exploitation. For human or animal genes, this control may involve an application in diagnosis or developing therapies for diseases. There is, for example, a patent on laboratory mice genetically designed to be prone to cancer, which are being used in anti-cancer research.
Perhaps the most ethically complicated application of genetic knowledge is to the human species itself. For example, we are now able to diagnose hereditary diseases before or soon after birth. Using family pedigrees, a genetic counselor can give prospective parents the information they need to make decisions about the risks of certain diseases in their offspring. Techniques such as amniocentesis and fetoscopy also provide information about genetic disease at an early stage of pregnancy. In addition, postnatal chemical tests can detect inherited problems in a newborn infant so that corrective procedures can be applied. Preimplantation diagnosis of embryos is another method of genetic screening which was developed to help couples that are at high risk of passing on a serious genetic disease. It is used in conjunction with in vitrofertilization (IVF) and has been applied successfully in the diagnosis of cystic fibrosis, Lesch-Nyhan syndrome, Duchenne muscular dystrophy, and Tay-Sachs disease. In this procedure, one or two cells are removed from an IVF embryo at the 8 to 16-cell stage and the genetic material in the biopsied cells can then be amplified and analyzed for the presence or absence of a defect. Healthy embryos can be rapidly transferred to a woman's uterus for implantation, while embryos that are deemed defective may be disposed of.
Preimplantation genetic tests and research on human embryos in general present profound ethical issues, the central one relating to the moral status of the human embryo. Opponents of embryo research believe that a human embryo is already a human being, and that it must be accorded the legal status of a person from the time of fertilization. Supporters of embryo research believe that very early embryos, those up to the implantation stage of development, do not have the same moral and legal status as persons. While they acknowledge that embryos are irrefutably genetically human, they believe they do not have the same moral relevance, because they lack specific capacities, including consciousness, reasoning, and sentience. They argue that it is morally acceptable to perform limited research on embryos, particularly because of the potential therapeutic and scientific benefit the research holds for humanity. Supporters consider it ethically acceptable to make scientific investigations during the early development of embryos up to 14 days following fertilization, the period during which implantation is believed to take place. Issues of embryo experimentation are frequently being raised with respect to ongoing research into the use of embryonic stem cells for gene therapy. Although stem cells can be harvested from the bone marrow of adults, the most accessible supply is found in human embryos. Companies specializing in stem cell research stand to reap huge financial windfalls from successful therapies developed via this science. For example, it might eventually be possible to grow genetically engineered stem cells into the brains of people suffering from such conditions as Parkinson's and Alzheimer's disease, or to grow them into the hearts of those suffering from cardiac ailments.
The power of the new genetics clearly rests in the information that it can provide about individuals and one of the widest concerns about its possible misuse relates to privacy and confidentiality. Now that the first sequenced draft of the human genome is virtually complete there are ambitions to make sequence maps of every individuals' genome. It is thought that with this information it will, for example, be possible to design personalized drug therapies for individuals requiring treatments on the basis of their genetic and biochemical information. The information provided by complete genome maps will be of great interest both to individuals and others, including family members, employers, schools, insurance companies and legal institutions. Genetic knowledge can be a double-edged sword. On the one hand, knowledge of a predisposition to a genetic disorder opens up the possibility of treatment. On the other hand, the enhanced ability to identify genetic characteristics and disease susceptibility may affect the individuals view themselves, and also the way we perceive and are perceived by others.
One of the current concerns is to protect individuals against the invasion of privacy while preserving the ability of academic, government and industrial researchers to use anonymous genetic information for medical research. In the United States, many states are wrestling with questions such as: Who owns genetic information? Do family members have a right to know the results of a genetic test? Do the police, military, employers, insurance companies and schools have a right to know the results of a genetic test? Should pharmaceutical companies own information about an individual's DNA without their informed consent? Should the possibility of economic benefit play a role in deciding whether an individual's DNA might be used for research purposes? How should genetic privacy be protected and what would happen if an individual loses the ability to make decisions about how their DNA is used? In 1995, the first genetic protection law in the U.S. was signed in Oregon. A distinctive feature of this Genetic Privacy Act was that it established genetic information, defined as the information about an individual or family obtained from a genetic test or individual's DNA sample (e.g., blood and tissue samples) as the personal property of the individual from whom it is removed. In simplest terms, this means giving tissue donors access to an existing legal framework to protect their genetic privacy and defend against any violation of it. Thus, an individual can sue if research organizations, biotechnology companies, or others use their samples without their explicit informed consent.
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