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Sunday, September 03, 2006

Bioethics and The Human Genome Project: Implications for Health Science Education

Bioethics is perhaps one of the most important and controversial subjects in health care today. Advances in technology are challenging society’s ability to assimilate and use available information resulting in fear, misinformation, poor program planning, and failure to proactivily meet future needs. The Human Genome Project is a prime example of the need for bioethical discourse.
The Human Genome Project (HGP) is an international 15 year effort begun in 1990 to discover the 60,000 to 80,000 human genes and the structure, organization, and function of DNA in chromosomes. Medical practice is rapidly changing as clinical technologies based on DNA diagnostics are combined with biotechnological advances capable of forming new treatment alternatives. Emphasis is shifting from the treatment of disease to a prevention based approach as the ability to test and treat genetic disease is usurping the long held belief that genetics cannot be altered. This is having a profound impact upon society and the delivery of Health Education programs. Historically health education has emphasized the behavioral and environmental aspects of health and prevention of disease. However, rapid biotechnological changes resulting from work such as the HGP promise to place genetics close beside exercise or diet in the choices facing the average American health consumer. This paper explores the issue of bioethics through a synopsis of the HGP, critical issues and concerns related to the project, future trends, and the implication for health education.

According to the University of Pennsylvania Center for Bioethics, bioethics is defined as “the study of moral issues in the fields of medical treatment and research...(or) more generically to describe ethical issues in the life sciences and the distribution of scarce medical resources.” (McGee and Coelho, 1997). Over the years ethics have evolved from the original Hippocratic Oath which required physicians to “do no harm” to the Nuremberg Code established at the end of W.W.II in response to abusive medical experimentation by Nazi Germany. Other landmark cases include the Tuskegee Study which resulted in directives for informed consent, Roe vs. Wade which began the still raging debate as to when life begins, and the Quinlin case which questioned when life ends.
Today, bioethical debates center around several broad topics; each with numerous legal, emotional, and social implications:
· Defining Life and Death: Including life-support and abortion.
· Reproductive Medicine: Including abortion, RU-486, “test-tube” babies, surrogate parents, artificial insemination, fetal tissue research, genetic testing, and in vitro fertilization.
· Economic Issues: Including managed care, access to affordable treatment, international disparity in resources, cost to society, and scarcity in organs/transplantation.
· Society vs. The Individual: Including physician assisted suicide, the right to refuse treatment, and the right to die.
· Technological Advances: Including the Human Genome Project, gene therapy, organ and tissue transplantation and others listed separately.
Bioethics is not a philosophical mental exercise, but rather the cornerstones of medical and health interventions. History presents a grim example of how the lack of discourse on bioethics can lead to not just poor planning but the death of innocent victims.
The Human Genome Project exemplifies the bioethical debate surrounding several of the above issues and in many cases, actually involves decisions ranging from quality of life issues or abortion to the right to die. It is one of the most daring undertakings of this century with profound results expected far into the next century.
The Human Genome Project
The Human Genome Project (HGP) is an international 15-year effort begun in 1990 to discover the 60,000 to 80,000 human genes and the structure, organization, and function of DNA in chromosomes. By “mapping” the gene sequence it is possible to diagnose, treat, or alter the course of a disease through early detection, proactive treatment regimens, the avoidance of environmental “triggers”, and the possible replacement of defective genes through gene therapy.
Initially genetic mapping appears to have little in common with behavioral, social, and environmental approach to disease prevention and health promotion used by health education, but surprisingly the HGP was formed in response to an environmental stimuli. The development and use of the atomic bomb resulted in the need to analyze genetic mutations resulting from radiation damage. The Department of Energy realized the best way to study the effects of radiation damage was to compare mutated genes to a baseline. The HGP has focused on three major areas; gene identification, physical mapping, and Sequencing. While the three areas compliment each other, each serves a distinct purpose. For example, simply identifying the gene does not disclose its function whereas correlating a gene to a particular disease does not account for the specific “triggers” or corresponding factors needed to produce the disease or condition. Despite these limitations, the HGP has dramatically expanded the scientific knowledge of genetically based diseases. Currently it is estimated that over 4,000 diseases are known to be genetically transmitted, with numerous others resulting from genetic alterations or mutations caused by environmental stimuli (National Center for Human Genome Project, 1997).
Genetic Testing and Health Education
As the identification of disease related genes continues so does the number of available genetic tests. Although genetic testing offers the potential to discover the cause...and possible cure...for thousands of the most devastating diseases and conditions known, the usefulness of the results is debated. The reliability of the tests the interpretation of results is problematic due to the inability to identify the genetic marker and fully understand the function and possible mutations caused by environmental triggers.
According to the Institute for Health Policy Studies, diagnostic kits for the detection of genetic markers is available within months or even weeks after the initial identification of the disease gene (1997). This “Drive-Through” approach to medical testing is only one area of concern for the medical field. Dr. McGee at the Center for Bioethics, reports that whereas five years ago genetic testing required a medical geneticist and genetic counselor, today technology companies are offering genetic testing for any adult patient whose doctor requested it...even for tests whose reliability has not been established (McGee, 1997). The confusion surrounding genetic testing can be seen in legislation drafted in response to the issue. For example, as one insurance company lamented, “what once described tests identifying specific genetic mutations (e.g., Huntingtons’ disease) now includes tests uncovering any medical problem related to or influenced by one’s genes (coronary artery disease).” (Linde, 1997). While the insurance industry attempts to maintain profit margins by mandating access to genetic test results, the impact on the field of health education is just as profound.
Health Education
Health education supports the individuals right to make informed decisions regarding their own health through the availability of information and experience. By assuming responsibility for behavioral changes such as diet and exercise, the individual is able to prevent, minimize, or delay many diseases or conditions. The role of genetics has been limited in the discussion of health education programs because there has been little control over hereditary factors; this is no longer true.
Genetic testing...done properly...can empower the individual and society to make informed decisions regarding their health and lives. Health education routinely addresses lifestyle and behavioral changes which may not demonstrate disease for 30 years; for example diet, smoking, and exercise. Similarly, knowledge of a predisposing genetic marker may allow an individual to make intelligent lifestyle or behavioral changes, or even surgical preventative measures. One example of this can be found in family patterns of breast cancer. Some women insist the choice is theirs to be tested or opt for a preventative mastectomy rather than face a potentially life threatening illness later in life. Physicians are agreeing in record numbers. Legally, there are questions regarding patients right to have all available medical information at their disposal. At the same time, Dr. McGee has found the average physician spends less than 13 minutes per check-up (McGee, 1997). This leaves the patient responsible for not only deciding whether or not to have the test performed, but also responsible for attempting to interpret the test results.
Test Results
There are several concerns in regard to the interpretation of test results.
· Genetic tests may give the impression that a disease can be predicted.
· It is difficult to define disease much less anticipate the degree or severity associated with onset.
· A person who carries a genetic marker or shows mild symptoms may be unable to secure insurance, experience unwarranted anxiety, or elect unnecessary treatment.
· Treatment or cure for the disease may not be available.
Questions for Health Education
· What, if any, role will health education play in the education and prevention of disease as it relates to genetic testing?
· Who will be responsible for assisting individuals in the decision to be tested and the
consequences of the test results?
· How will “prevention” be defined in the future?
· How will a “patient” be defined in the future?
· What is being done to address these concerns?
Again, these are not simply rhetorical questions. Health education is in a unique position to address the educational, informational, and preventative aspects of the genetic testing issue. Medicine is not structured to deal with disease BEFORE it is manifested, nor address the behavioral and lifestyle changes that may be associated with maintenance or prevention of disease. Furthermore, individuals seeking information are not yet “patients” per se...and may not ever become patients. Similarly, psychology and counseling is a vital component to genetic counseling with the necessity of addressing the emotional impact of potential disease, but of little use for health related maintenance or preventative behaviors. Currently this void is being filled by the technology firms responsible for marketing the genetic test kits, for example, Myriad and OncorMed...among others...provide short courses for physicians and CD-ROM aids for the patients. Not only are these considered ineffective means to address such a complex issue; conflicts of interest are becoming commonplace. These same companies use the data collected during the testing and training to patent mutations and outcomes justifying the effectiveness of the tests. This type of clinical trials has been virtually unheard of previously (McGee, 1997).
Curriculum Infusion
Without adequate education and information, the health consumer is left to decide whether or not to be tested, interpret the results, and decide on treatment options with little assistance other than a few educational CD-ROMS available from the manufacturer of the tests. Genetic testing and education without understanding can reinforce the misperception that genes alone prescribe individual health destiny. In order to assist the consumer, it is necessary to first infuse the information into the formal educational requirements for health educators.
While a concerted effort is being made in many high schools across America to instill the findings and implications of the Human Genome Project into the curriculum, millions of adults remain totally uninformed and those outside of genetic or biological training at the college level have been slow to consider the implications. The curricula that does exist often lacks a clear conceptual framework for ethical analysis and structure for class discussion and learning. According to the American Institute of Biology “if cherished tenets of medical ethics such as informed consent and nondirective counseling are to be more than topics of discussion...public education must acquaint potential consumers of genetic medicine with some basic principles of technology” (McInerney, 1995). Currently, only 16% of patients receive genetic counseling before undergoing genetic testing for cancer (McGee, 1997); of those patients who do receive educational or genetic counseling, it is most likely to be requested from an internist (90% of request) as compared to a surgeon (9% of request); however, the total number of patients who receive any education or counseling remains small (Paola and Barten, 1995).
The American Society of Human Genetics Board of Directors and the American College of Medical Genetics Board of Directors has issued guidelines for professional consideration in the implementation of educational or counseling services related to genetic counseling. These include:
· Treatment and Prevention: Tests that offer therapeutic benefit, preventative advice for high risk individuals, and/or aid in reproductive decisions.
· Surveillance: Tests that can identify early disease states.
· Reduction of Surveillance: Tests that are able to exclude the possibility of a disease and result in the discontinuance of medical surveillance.
· Refinement of Prognosis: Tests that offer a precise diagnosis which indicate the severity of a known disease.
Although the issue of genetic testing is far from resolved in the medical field, a framework is being developed to address this fast growing area. Health educators are in a unique position to take a proactive stance in regard to this important area. Without the ability to educate consumers on these issues, health education will fail to serve the best interests of society. Having shared many of these experiences with a spouse who has a genetically based condition, I can unequivocally state there is a great need for comprehensive information and education. If indeed health education is designed to assist individuals in making informed decisions about their health, the issue of genetic testing and bioethics is vital. The time to begin is now.

American Society of Human Genetics Board of Directors and the American College of Medical Genetics Board of Directors. (1995). Points to Consider: Ethical, Legal, and Pschosocial Implications of Genetic Testing in Children and Adolescents. The American Society of Human Genetics. 0002-9297/95/5705-0031
Boyd, Kenneth. (1995). What can medical ethics learn from history? Journal of Medical Ethics. V21n4, pp 197-198. Aug 1995.
Cho, Mildred. (1997). Genetic technologies: issues for ethics committees. Mid-Atlantic Ethics Committee Newletter.
Human Genome Project Information. (1997). Human Genome Project Frequently Asked Questions.
Linde, Greg. (1997). Getting Frentic about genetics. Best’s Review: Life/Health. V98n4. Pp 63. Aug. 1997.
McGee, Glenn. (1997). To Your Health: NPR All Things Considered Commentary.
McGee, Glenn. (1997). Drive-Through genetic testing poses new ethical dilemmas. Academic Physician and Scientist. Center for Bioethics. University of Pennsylvania.
McGee, Glenn and Coelho, Danial. (1997). Center for Bioethics. University of Pennsylvania.
McInerney, Joseph. (1995). The Human Genome Project and biology education. Bioscience. V45n11. Pp 786-791. Dec 1995.

National Center for Human Genome Research. (1997). Understanding Gene Testing.


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