The advent of the genomic era has brought with it a host of opinions regarding to what ends genetic tools ought to be applied. There is a growing interest in research that will illustrate the genetic diversity of populations. Advocates suggest that research detailing unique features of populations will allow for the development of medications specific to genomic characteristics, and will allow groups to more effectively assess their need for preventive medicine. Critics of research into genetic diversity ring bells that warn of genetic research as the modern eugenics, the tip of the iceberg for discrimination against individuals who are members of particular groups that have been associated with an increased frequency of an allele. The stormy history of racial relationships in the United States casts a dark shadow over the glaring potential of such research. In light of the potential drawbacks it is essential to recognize the evolution of American institutions and the fundamental shift in the principles of bioethics from a platform of group benefit to a system that values autonomy above most other considerations. Research into the genetic diversity of the American population must be taken up within a context of meaningful, enforceable guidelines to ensure ethical use of information.
[...] Genetic research as a threat to the current power structure It has commonly been said that federal investment in the genetic diversity of the population should not be done because have a duty to protect from discrimination based on this research. Such paternalistic comments suggest that the outcome of the science may already be known! Surely, the methods of science will reveal a pecking order that reflects the social and economic order that currently exists in our communities! It is tempting to ask what would happen if that is not the case. [...]
[...] Critics of research into the genetic diversity of the population have legitimate concern that genetic test results will result in discrimination against individuals as they appeal for insurance coverage in the private market. People worry that genetic status will be a basis for employment discrimination due to the employer-based insurance system. There is apprehension that research into the genetic variability of the population may be applied to a particular case simply because one is visibly associated with that group, even though the genetic variation may be entirely irrelevant in that particular case. [...]
[...] It is all in the details: the importance of communication with the public and subjects regarding genetic research Further forays into the basic and applied research of genetic diversity within the population will require deliberate, strategic, orchestrated communication with the public through the general media. Genetic screening and early successes identifying disease states where one gene equals one disease has led the public to oversimplify the contribution of genetics to disease.[xxxii] Examples of press coverage of genomics illustrate the evolution of the discourse on genomics and the ethical, legal, and social issues related to genomics research. [...]
[...] Insurance Underwriting in the Genetic Era Am J Hum Genet 60:205- [xii] American Council of Life Insurance [xiii] Human Genome Project Information: Genetic Privacy and Legislation. http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml. Accessed March [xiv] National Conference of State Legislatures, Genetics Legislation Database. http://www.ncsl.org/programs/health/genetics/geneticsDB.cfm . Accessed March Harpending, HC. [xvi]Schwartz RS. Racial profiling in medical research. NEJM 344:1392- [xvii] Risch, N. Categorization of humans in biomedical research. Genome Biology. comment 2007.1 - [xviii] Thomas JC. Genomics and the Public Health Code of Ethics. Am J Public Health 95:2139- [xix] Cho MK. [...]
[...] Furthermore, it is important to distinguish how research into the genetic diversity of the American population is unique from eugenics. The terms eugenics was first coined by Francis Galton in 1883, defined as science of improvement of the human race germ plasm through better breeding', and as the ‘study of agencies under social control that may improve or impair the racial qualities of future generations'. A more popular general definition may be promotion of reproductive options favoring desired human genetic traits, especially health, longevity, talent, intelligence, and unselfish behavior.'[iv] Research into difference between groups is not equal to eugenics. [...]
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