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Ethical Issues and Public Opinion - Human Genome Project Considersethical, Legal, And Social Issues, Surveys Reveal Support For, Andconcern About, Genetic Research Andengineering

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The institutions of genetic, scientific, and technical research, and the industries of genetic application, are relatively well organized and generously funded. Their imperatives are clear: push toward new knowledge and its applications. By contrast, our ethical, social discussion is unfocused, episodic, and scattered. We need to harness moral thinking to genetic technique. The need for organized, intelligent debate involving an active public and committed scientists has never been clearer.

—Everett Mendelsohn, professor of the history of science, Harvard University, "The Eugenic Temptation: When Ethics Lag behind Technology," Harvard Magazine, March-April 2000

Rapid advances in genetics and its applications pose new and complicated ethical, legal, regulatory, and policy issues for individuals and society. The issues society must consider include how to protect and manage genetic information and who should have access to it; the consequences of knowledge about personal genetic information for individuals; and the repercussions of genomic information for groups such as ethnic and racial minorities. For example, African-Americans were among the first to call for the inclusion of African-American genetic sequences in the human genome's template, and their concerns are vitally important because historically they have been victimized by "genetic inquiries" and research. Genetic discrimination poses a threat to members of minority groups, as well as other workers, when employers are able to take adverse action based on applicants' or employees' asymptomatic genetic predisposition to, or probability of developing, a medical disorder.

Furthermore, many scientists, ethicists, and policy makers fear that without adequate protections genetic information may be used to deny individuals not only employment but also health care coverage or legal rights should genetic information be misused in the criminal justice system. The American public shares these concerns about privacy and the management of genetic information. A June 2001 Gallup Poll found widespread public opposition to allowing health insurance companies and employers access to genetic information. Three-quarters of U.S. adults believed that health insurance companies should not have access to genetic information when deciding about health coverage, and 76% said employers should not have access to this information when making hiring or other employment decisions. (See Table 10.1.)

A survey conducted by the Genetics and Public Policy Center of the Phoebe R. Berman Bioethics Institute at Johns Hopkins University found that between 2002 and 2004 the proportion of Americans who believe spouses and extended family have the right to know genetic test results increased, while the proportion who believe employers and insurance carriers have a right to know decreased. According to Reproductive Genetic Testing: What America Thinks (Washington, DC, December 2004), about two-thirds of respondents in 2002 believed that the spouse of a person carrying a gene increasing the risk of disease had a right to know. In the 2004 survey more than 75% of survey respondents thought spouses had a right to know, and more than 50% indicated that extended family members also had a right to know. This contrasted sharply with support for disclosing genetic test results to insurance carriers and employers. In the 2004 survey, only one-fifth of respondents believed insurance carriers had a right to such information, and fewer than 10% believed employers should be informed of test results.

A host of ethical issues related to health and medical care arise from increased availability of genetic information, such as the use of this information to guide reproductive decision making and the application of genetic engineering to reproductive technology. Reproductive applications are an especially emotionally charged topic as many antiabortion advocates staunchly oppose any action to alter the development or course of a naturally occurring pregnancy, such as in vitro fertilization and TABLE 10.1
Public opinion on access to genetic information, July 2001
SOURCE: Joseph Carroll, "Do you think that medical insurance companies should or should not have access to this information in deciding about health care coverage for individuals?" and "Do you think that employers should or should not have access to this information in deciding whether or not to hire someone?" in "Most Americans Oppose Giving Genetic Information to Health Insurers and Employers," Poll Analyses, The Gallup Organization, July 11, 2001, March 14, 2005) Copyright © 2001 by The Gallup Organization. Reproduced by permission of The Gallup Organization.

Should Should not No opinion
2001 June 28–July 1 21% 74 5
2001 June 28–July 1 19% 76 5

preimplantation intervention as well as the use of stem cells obtained from human embryos. Scientists, ethicists, and other observers also fear that genetic engineering technology will rapidly progress from enabling prenatal diagnosis and intervention to prevent serious disease to preconception selection of the traits and attributes of offspring—the creation of "designer babies."

Genetic testing challenges health care professionals to rapidly acquire new knowledge and skills in order to effectively use new technology and to assist their patients in making informed choices. The quality, reliability, and utility of genetic testing must be continuously reevaluated and regulated. Along with quality control measures, health care professionals and consumers must determine whether it is appropriate to perform tests for conditions for which no treatment exists and how to interpret and act on test results such as an individual's increased susceptibility to a disease associated with several genes and environmental triggers.

Philosophical, psychological, and spiritual considerations invite mental health professionals, ethicists, members of the clergy, and society overall to redefine concepts of human responsibility, free will, and genetic determinism. Behavioral genetics looks at the extent to which genes influence behavior and the human capacity to control behavior. It also attempts to describe the biological basis and heritability of traits ranging from intelligence and risk-taking behaviors to sexual orientation and alcoholism.

There also are environmental issues associated with the applications of genetic research, such as weighing the risks and benefits to human health and the environment of creating genetically modified animals, crops, and other products for human consumption. Legal and financial issues center on ownership of genes, deoxyribonucleic acid (DNA), and related data, property rights, patents, copyrights, and public access to research data and other genetic information.

In the rapidly changing science and technology of genomics, legal precedent and accepted scientific consensus often do not exist. In July 2001 eighty judges and forty scientists from Europe, Asia, Canada, and the United States met in Kona, Hawaii, for the Courts First International Conversation on EnviroGenetics Disputes and Issues. The convention was organized by the Einstein Institute for Science, Health, and the Courts, and cosponsored by the U.S. Department of Energy's (DOE) Human Genome Project (HGP) and the National Institutes of Health's (NIH) National Institute of Environmental Health Sciences. The convention aimed to assess the potential impact of genomics on the courts as well as the development of effective mechanisms to facilitate dispute resolution. Attendee Richard Guy, a retired chief justice of the Washington State Supreme Court, remarked that "it is essential that we develop dispute-resolution methods that are as intelligent as the discoveries themselves." In 2004 the Third Courts International Working Conversation on EnviroGenetics Disputes and Issues convened in Australia. The group intends to publish its findings and conclusions in an international guidebook on court management of life science technology disputes and evidence.

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about 9 years ago

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