Danger and Genomic Technologies



Danger and Genomic Technologies


Rita Black Monsen DSN, MPH, RN, FAAN



Introduction

New and emerging approaches to maintenance of health and management of illness challenge healthcare professionals, including nurses, to continually update their knowledge and skills. Genetic technologies and the geneticization of health care proliferate at a rapid pace across the world. Societies and community leaders are often reluctant to develop policies and regulations in the face of these changes and may rely on the advice of experts in medical technology to chart their courses of action. Frequently, individuals and families who might benefit or be harmed by such new developments are called upon to testify about their experiences and recommendations. Law and policy makers are also influenced by the economic and political potentials that accompany these ventures. Moreover, there is a need for continued monitoring and adjustment of protections as applications of technology expand. I believe that there are three dangers associated with genetic technologies and genomic healthcare approaches as they are delivered to patients, families, and communities, indeed society as a whole. These are danger of discrimination associated with genetic testing and discovery of inherited risk for illness; danger of commercial exploitation of individuals, families, and communities as
genetic technologies proliferate in agriculture, health care, and athletics; and danger associated with inadequate preparation of healthcare professionals to utilize gene-based diagnostics and therapeutics appropriately for the improvement of health and quality of life of entire societies.


Danger of Discrimination

The Coalition for Genetic Fairness, an organization that joins healthcare professionals, consumers, and representatives of the biotechnology and pharmaceutical industries, is calling for a national law protecting individuals from discrimination in employment and insurance coverage based upon genetic make-up (CGF 2006). Protection against misuse or limitation of genetic information (Haga and Willard 2005), including how information is used to determine risk classification for health insurance and employment, varies widely between states. Indeed, testimony by various groups before a federal advisory board revealed that people were fearful of genetic testing because of the potential for discrimination. Such a law has received overwhelming support from elected leaders in the federal government (Greely 2005), and would augment existing state legislation as well as the Americans with Disabilities Act of 1990. Combating fears of discrimination in the community is important, according to Francis Collins, Director of the National Human Genome Research Institute, because reluctance to participate in testing and trials for gene-based diagnostics and therapeutics is likely to slow progress toward efficacious management of illness (CGF 2006).

One important example of discrimination by an employer is the case of the Burlington Northern Santa Fe Railway Company (Haga and Willard 2005) where 36 employees were threatened with denial of payment for injury claims because the railway asserted that genetic information it had collected relieved it of responsibility for work-related disability. The Equal Opportunity Commission settled with Burlington for $2.2 million in a 2001 suit that demonstrated misuse of genetic information based on routine testing for genetic defects without employee knowledge and consent (Schafer 2001).

In contrast, IBM recently announced its commitment to hiring practices and decisions for health insurance coverage not based upon genetic information. This precedent by a company with over 300,000 employees may shape corporate employment policies (Haga and Willard 2005). If not, we face the liklihood that public fears of unfair practices and discrimination based on genetic information will curtail research that could deliver safe, cost-effective genomic health care to those in need in the future.



Danger of Commercialization

The biotech industry provides advancing technologies for the production of consumer goods, industrial equipment and products, and new pathways for research and development. This is one of the fastest growing sectors of the United States and world economies despite enormous front-end investments required for the discovery and development of successful products. In the area of agriculture, the Department of Energy Office of Science, Office of Biological and Environmental Research reports that in 2003 about 167 million acres in 18 countries were sown with transgenic crops (plants or animals that have DNA from different organisms, also known as genetically engineered), principally insecticide- and herbicide-resistant corn, soybeans, canola, and cotton (Human Genome Project Information 2004).

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Jun 26, 2016 | Posted by in GENERAL SURGERY | Comments Off on Danger and Genomic Technologies

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