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

Ethical Issues and Public Opinion - Human Genome Project Considersethical, Legal, And Social Issues

genetic research testing insurance

Thoughtful review and analyses of policy issues and ethical considerations were deemed so pivotal to society and to the success of the HGP that the DOE and the NIH dedicated between 3% and 5% of its annual HGP budgets toward the study of the ethical, legal, and social issues (ELSI) arising from the availability of genetic information. The Human Genome Project's stated ELSI goals for 1998 to 2003 were to:

  • Examine issues surrounding the completion of the human DNA sequence and the study of human genetic variation
  • Examine issues raised by the integration of genetic technologies and information into health care and public health activities
  • Examine issues raised by the integration of knowledge about genomics and gene-environment interactions in nonclinical settings
  • Explore how new genetic knowledge may interact with a variety of philosophical, theological, and ethical perspectives
  • Explore how racial, ethnic, and socioeconomic factors affect the use, understanding, and interpretation of genetic information; the use of genetic services; and the development of policy

The HGP endeavor constitutes the world's largest bioethics program, and it has become a model for ELSI programs throughout the world. At the January 2002 HGP conference about ELSI related to human genetics research, investigators presented research about a wide range of topics, including:

  • Intellectual property rights issues related to the HGP—including concerns that patenting policies for genetic research may result in less than optimal use of genetic research. Issues include patent policy, rapid entry of the private sector into gene sequencing research, and the changing relationship among government, the nonprofit research sector, and the profit-motivated private sector.
  • Regulation of biobanks—the creation of repositories of biological specimens linked to phenotypic data pose questions of law, ethics, and policy such as the emergence of commercial brokers, the population-based and international scale of the new specimen banks, and the use of the Internet to recruit donors.
  • Perspectives on issues involved in genetic disorders—this project examines healthy, working peoples' perceptions of ELSI concerning complex genetic disorders such as alcoholism, cancer, depression, and diabetes.
  • Public information about gene tests and gene clinics—the creation of a publicly funded medical genetics information resource for physicians, researchers, and other health care providers, that is available at no cost to all interested persons, and the development of television, journalism, and other media programs to inform and educate middle school and high school students as well as the public about issues involving genetics.
  • Assessing public understanding—to explore the ways that information about an emerging area of science that is intertwined with public issues affects public understanding and to examine the overall impact of ELSI projects on public understanding of genome science.
  • Ethical and legal issues arising from complex genetic disorders—to analyze how the courts have addressed genetic testing and genetic disease and whether complex genetic diseases are considered differently than single-gene disorders.

Study Questions Impact of Disclosing Results of
Genetic Testing

The National Human Genome Research Institute funds studies that consider the ethical and public policy implications of genetic testing and research. One such study looked at how the results of genetic tests for adult-onset diseases might influence insurance purchases. Investigators followed 148 healthy, normal people participating in a randomized clinical trial of genetic testing for Alzheimer's disease for one year after testing for the presence of a specific allele of the Apolipoprotein E (APOE) gene, which if present increases the risk of developing Alzheimer's disease. The researchers found that subjects who tested positive were 5.76 times more likely to have purchased or increased the scope of their long-term care insurance than those who tested negative for APOE. Presumably, this is because they anticipated increased need for insurance to help defray some of the costs of long-term medical and nonmedical care, such as assistance with activities of daily living.

This finding concerns insurers, who fear that when genetic testing for Alzheimer's risk assessment becomes common, it will trigger adverse selection in long-term care insurance. Adverse selection occurs when individuals take financial advantage of risk classification systems. In this instance, insurance companies anticipate that a disproportionate number of people at risk of using the insurance will choose to purchase it. Insurance companies contend that they too should have access to the results of genetic testing because if they are unaware of occurrences of adverse selection they could experience economic losses.

On the other hand, consumers and advocates of anti-genetic discrimination legislation contend that if genetic test results are shared with insurers, many consumers could be denied coverage or charged excessively high premiums. They believe that distinctions made on the basis of genetic information are unfair because genetic makeup, unlike personal behaviors that modify health risks, cannot be changed. Further, researchers speculate that the fear of discrimination may lead people to decline to participate in genetic research and testing (Cathleen D. Zick et al., "Genetic Testing for Alzheimer's Disease and Its Impact on Insurance Purchasing Behavior," Health Affairs, vol. 24, no. 2, March-April 2005).

The Promise and Potential Perils of Genomics

An article in the February 11, 2005, issue of the New York Times outlined the scientific and commercial possibilities of synthetic biology—the new technology that enables scientists to write genes and genomes from scratch as opposed to trading naturally occurring genes from organism to organism. Oliver Morton presented examples of the great promise in designing genomes, such as the effort to produce the malaria drug artemisinin, more cost effectively. He also observed, however, that companies that synthesize genes on demand already exist, and cautioned that as this technology becomes increasingly affordable and available, the likelihood that someone may use it to create pathogens increases. Further, he acknowledged that diseases can be genetically engineered to be drug- and vaccine-resistant, warning that as a society we have not yet implemented a strategy to safeguard against the use of genetically engineered pathogens as weapons. Morton concluded that informed and concerned citizens can help to protect against misuse of genetic engineering technologies but added that "to spur such debates in the wider public, biologists themselves will have to become more willing to think and talk about the ever more powerful technologies that they increasingly take for granted in the lab" ("Biology's New Forbidden Fruit," New York Times, February 11, 2005).

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