Whose Life Is It Anyway?

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Table of Contents

Introduction
Access to Personal Genetic Information
Using Personal Genetic Information
Relationship between Personal Genetic Information, Individuals and Society
Effect of Genetic Information on Members of Minority Communities
Conclusion
References

Introduction

In the United States, genetic information is generally defined as personal property. Different states, however, use different wordings to imply the same meaning as far as defining genetic information is concerned. In Colorado, genetic information is regarded as the unique property of an individual (Patel, Roger & Haux, 2001).

In Florida, the results of deoxyribonucleic acid (DNA) are the exclusive property of an individual. Louisiana provides that an insured’s genetic information is the property of the individual while in Oregon, an individual’s genetic information and DNA sample are the property of the individual except in circumstances where the sample or information is used in anonymous research.

According to Thompson and Chadwick (1999), genetic information is considered to be exclusively personal and will enable scientists to identify each human being as genetically unique. It also provides a means to predict to some degree an individual’s future life especially in terms of physical and mental well being. Genetic information often reveals predictors of undesirable sicknesses such as cancer and other conditions that lead to mental illness (Thompson & Chadwick, 1999).

Access to Personal Genetic Information

Due to concerns about the ways in which certain uses of personal genetic information can lead to various kinds of harm to persons, efforts have been made to come up with genetic specific laws (Tavani, 2006). In the United States, various laws exist to protect individuals against having their genetic information used in ways that can adversely affect their lives.

The affected individuals may fail to secure employment or they may be denied access to medical insurance. According to Tavani (2006), a total of 41 states in the United States had enacted legislation on genetic discrimination by the year 2006 and 31 others had enacted legislation on genetic discrimination at the work place.

Tavani (2006) identified two theories that are associated with informational privacy; the control theory and the restricted access theory. Under the control theory, an individual has privacy if and only if he or she has control over personal information. The restricted access theory states that one has privacy when access to information about him or her is limited or restricted in certain contexts.

The control theory recognizes the fact that it is up to an individual to decide who should have access to his or her personal information. An individual can also choose to deny others access to his or her personal information. Restricted access theory on the other hand recognizes the importance of setting up contexts or zones of privacy (Tavani, 2006).

According to Speaker, Lindee and Hanson (1993), the human genome project poses serious ethical, legal and social problems. Questions such as how information about genetic conditions which can be diagnosed, but not treated, will be handled and about who should have access to genetic information about individuals are of great concern to stake holders (Speaker, Lindee & Hanson, 1993).

Research has indicated that many institutions could use new genetic information to exercise control over individuals. Schools, health insurers and the criminal justice system have a stake in predicting and controlling behavior and knowledge of the genetic characteristics of individuals.

Based on the genetic information, vulnerable people could be excluded from insurance coverage or students may be put in different academic categories. Some scientists involved in the genome project have suggested that the advantage of a complete genetic map is that it will permit the analysis of the inheritance of traits such as intelligence, personality and mental illness (Speaker, Lindee & Hanson, 1993).

Obviously, personal genetic information is personal property and belongs to individuals. However, genetic data may be accessed by different people who by law are allowed to handle such information. These include doctors, insurers, scientists, employers and government agencies.

Using Personal Genetic Information

According to Speaker, Lindee and Hanson (1993), the fact that genetic information will be used seems indisputable. However, how it will be used remains debatable. It is thus critical to have the issue of ethical implications to the use of genetic information dealt with as fast as possible.

As explained earlier, genetic information may be used by different institutions or people and for varying reasons. Scientists will use the information to determine the characteristics of individuals and predict their future behavior, schools may use genetic information to figure out how to categorize students based on their intelligence level and insurers will use it to check whether or not an individual should be insured (Speaker, Lindee & Hanson, 1993).

Relationship between Personal Genetic Information, Individuals and Society

Many people are afraid that genetic information may be used by institutions against them. Insurers for example, may end up using genetic data to give medical cover selectively. Children at school may also be discriminated on the basis of genetic information (Speaker, Lindee & Hanson, 1993).

When information about people’s genetic information is let out into the public domain, the society may start creating categories that could have devastating effects on people. Based on personal genetic information, people may be singled out and treated very unfairly by others.

According to Jeffords (1998), researchers are particularly concerned that the fear of being discriminated will prevent individuals from participating in research studies or taking advantage of new genetic technologies to improve their medical care. Although scientific research guarantees higher quality of medical care in the future, Jeffords notes that it is only the federal legislation that can assure the public that whatever information is gathered about them is safe (Jeffords, 1998).

According to Sateesh (2008), genetic discrimination may be experienced at the work place. He also cites concerns that insurers will use genetic information to deny, limit or cancel insurance policies while employers will use genetic information against existing workers or to screen potential employees. Given that DNA samples can be held indefinitely, there is the added threat that the samples will be used for purposes other than those for which they were collected (Sateesh, 2008).

While in power, US President Bill Clinton signed an executive order prohibiting every federal department and agency from using genetic information in any hiring or promotion action. The order prohibits federal employers from requiring genetic tests as a condition of being hired or using genetic information to classify employees in a manner that deprives them of future opportunities. The order also provides strong privacy protections to any genetic information used for medical treatment and research (Sateesh, 2008).

Effect of Genetic Information on Members of Minority Communities

Researchers have argued that it is not possible for one to foresee all culturally specific risks that a minority group may face. This may be linked to the fact that minority community members’ perceptions of these risks may have been heightened by their historical experiences of being economically and politically disadvantaged with respect to the majority in the society (Sateesh, 2008).

The differences in power and privileges between researchers and socially defined populations that lack significant economic and political resources may affect the ability of the latter to fully conceptualize and negotiate the conditions for research participation, and to take effective action on any subsequent concerns about sample misuse and adverse interpretations of genetic findings (Sateesh, 2008).

Because of differences in economic power, researchers may be discouraged from using genetic tests and samples from minority communities. For this reason, community involvement and consultation are very critical during the planning stage of any genetic research. According to Trull (2002), genetic counseling in ethnic minority communities often requires the assistance of a knowledgeable member of the same community.

Any efforts from a stranger to penetrate the community may meet serious opposition and from the community members. The confidence of the minority community members can only be guaranteed when one of their own is involved. Part of the time set apart for the research must therefore be used wisely to try and win support from the community. Failure to do this will lead to poor response and a waste of time and resources (Trull, 2002).

Murphy and Lappé (1994) noted that no question is more pressing from the viewpoint of ethnic and racial minorities than understanding the ways in which new genetic knowledge will shape their self understanding and social standing. Concerns raised include whether the knowledge generated by the genome project should be used to identify, classify or label racial or ethnic groups or to establish the boundaries of their membership.

When screening programs are undertaken for different groups of people, there are worries as to whether or not traditional, cultural and political definitions of race should prevail.

Minority groups seek to know if the information generated by the genome project will be used to draw new, more precise boundaries regarding membership in existing groups or if individuals who have tried to break their ties with ethnic or racial groups will be forced to confront their biological ancestry and lineage in ways that go against their own self perception and the lives they have built with others (Murphy & Lappé, 1994).

This is particularly important in places where homelands are established based on political considerations or the beliefs of social scientists about minority ethnic identities (Gorenburg, 2003).

Conclusion

Genetic information has tremendous social power (Speaker, Lindee & Hanson, 1993). The wide variety of laws and sources of laws, present a challenge to administer and follow the applicable law or laws. However, protection of genetic information is a major concern for the public and must be handled carefully (Patel, Roger & Haux, 2001).

Rapid advances in genetic research and the emerging applications to medical practice have increased public awareness and public concerns about people that should have access to this information and how it will be used.

Even with medical records privacy and confidentiality laws available in some places, possible loss of one’s genetic privacy can greatly influence an individual’s decision to undergo genetic testing. In the year 2001, researchers discovered that about 86% of people surveyed in the United States were concerned that insurers and employers might use genetic information against them (Patel, Roger & Haux, 2001).

It is quite unfair to allow genetic information to be used to cause harm to an individual (Paola, Walker & Nixon, 2009). As a result, those involved with the maintenance and protection of genetic information face a daunting task of ensuring that they provide the protections allowed by their state laws and the Federal government regulations.

References

Gorenburg, D. P. (2003). Minority ethnic mobilization in the Russian Federation. Cambridge, UK: Cambridge University Press.

Jeffords, J. M. (1998). Genetic Information and Health Care: Hearing before the Committee on Labor and Human Resources, U.S. Senate. Darby, PA: DIANE Publishing.

Murphy, T. F. & Lappé, M. (1994). Justice and the Human Genome Project. Berkeley, CA: University of California Press.

Paola, F. A., Walker, R. & Nixon, L. L. (2009). Medical Ethics and Humanities. Burlington, MA: Jones & Bartlett Learning.

Patel, V. H., Roger, R. & Haux, R. (2001). MEDINFO: proceedings of the 10^th World Conference on Medical Informatics, Part 2. Amsterdam: IOS Press.

Sateesh, M. K. (2008). Bioethics and Biosafety. New Delhi: I. K. International Pvt Ltd

Speaker, S. L., Lindee, M. S. & Hanson, E. (1993). A guide to the Human Genome Project: technologies, people, and institutions. Philadelphia, PA: Chemical Heritage Foundation.

Tavani, H. T. (2006). Ethics, computing, and genomics. Burlington, MA: Jones & Bartlett Learning.

Thompson, A. K. & Chadwick, R. F. (1999). Genetic information: Acquisition, Access, and Control. New York: Springer.

Trull, A. K. (2002). Biomarkers of Disease: An Evidence-Based Approach. Cambridge, UK: Cambridge University Press.

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