Introduction

We now know that genes affect virtually all human characteristics and diseases. Experts anticipate substantial potential for developing health care innovations based on advances in genomics.

Ethics (the science of moral principles) and genomics (the science of the function of genes) have been intertwined for centuries. Humans pondered the heritabil-ity of traits as long as 6000 years ago with Babylonian engravings evincing the earliest known pedigrees. Aristotle and Hippocrates deduced that most important human characteristics were inherited and transmitted through semen. Thematic in this history is a continued desire to harness genetic knowledge to improve humanity's lot. Genetic testing offers a conduit to that end, with the benefits of testing potentially huge. Gene testing can inform potential parents of the risk of having a child with a genetic disease, permitting them to plan for such, and in many cases permitting them to decide to terminate an affected fetus. Genetic testing of newborns permits immediate treatment to reverse the lethal effects of disease, such as in the case of phenylketonuria (PKU). Other gene tests promise to promote health by indicating the need for increased medical surveillance, a change in lifestyle, or which medications will be safe and effective. Moreover, genetic testing can evaluate the toxicity of chemical compounds and facilitate the development of genetically modified organisms to improve health by removing allergens and adding key nutrients. However, use of genetic testing presents numerous complex ethical issues involving individuals, families, and the society at large.

Concern that use of genetic technologies may create injustices derives both from past injusticesa the predictive nature of genetic information and the fact that one's genotype is informative not only of that individual but of their blood relatives as well. Potential adversity continues to engage stakeholder organizations around the globe. The two primary ethical concerns arising from the use of genetic technologies are 1) en-

aThe American Eugenics Movement spawned forced sterilization laws in many states and mandatory sickle cell testing in the 1970s that led to discrimination.

suring equitable sharing of the benefits of genetic technology throughout the world, and 2) maximizing the benefits vs. harms in each instance of use. Despite international agreements and recommendations, concerns remain formidable challenges.

WHAT ETHICAL CONCERNS ARISE AND WHY?

Given that the major diseases are known to have genetic components, knowledge of an individual's genotype will be increasingly important to understanding disease development and expression. The mere availability of genetic testing does not ensure that more good than harm will result from use. Ethically appropriate use of gene testing will require not only compliance with practice standards, but physician ability to accurately interpret a test result and manage patient care accordingly, particularly as the majority of tests will predict relative risk (not yes or no) for a specific disease. Although the fund of genomic knowledge is rapidly growing, a clinician's ability to predict health risk based on a gene test result will be in many instances variable and limited. A gene test result will neither indicate when a person is likely to become ill nor how severe illness will be when it strikes, because nongenetic factors significantly influence health status. Determining the medical meaning of a test result will involve synthesizing various factors in addition to the presence or absence of a gene variant, such as an individual's present, past, and anticipated exposures; other biological processes involved; and even one's socioeconomic situation, such as the extent of health benefits and whether one can pay treatments not covered by insurance.

All humans share 99.9% of the same genes. Despite this overwhelming homogeneity in genotype, the 0.1% differences may prove so divisive as to create a genetic underclass of individuals whose genetic lot imposes societal cost burdens. In efforts to ensure that all humanity can benefit from genomic advances, the United Nations Education, Scientific, and Cultural Organization, in 1997, promulgated the Universal Declaration on the Human Genome and Human Rights.[1,2] This document commands international commitment to advancing genomics only through the preservation of the fundamental sanctity of human dignity, freedom, and fundamental human rights. Of primary concern to international bio-ethics committees is that genomic testing improve the world's health rather than increase existing health disparities.[3-6]

The ethical concerns about the use of genetic testing are vast and complex.b

The primary ethical issues arising in provision of genetic tests are:

Who owns genetic information? What constitutes fair use of genetic information? How can we ensure that genetic tests will be evaluated for accuracy, reliability, and utility before they are commercially available? Can informed consent, for research and clinical testing, be assured given low levels of understanding of genetics, difficulties in enforcing nondirective counseling standards, when interpretation is required? Can we ensure that all testing is voluntary? Should parents always have the right to have their underage children tested? Can we ensure the privacy of genetic information? Can we ensure the appropriate handling of biological samples?

Can we ensure the appropriate introduction and use of genetic tests and genetic data?

The bulk of ethics research, recommendations, and policy setting has identified and clarified potential for harm and spurred measures to prevent or mitigate that potential. While most of these measures have yet to be tested, a smattering of high-profile situations illustrate some of the types of ethical quandaries that can arise.

bShould genetic tests be regulated differently from other medical tests? Should they be used in locales lacking regulation? How can the use of tests be regulated to ensure that they give factual results? Should regulation exist for all types of genetic defects or just some; for example, are tests for poor eyesight the same as tests indicating a tendency to baldness? Are tests to be used in in vitro embryos to ensure that positive embryos are not implanted? Are tests to be used if no proven disease treatment or strategy to mitigate risk exists, even if individuals desperately want to know? What if one wants to know, not for themselves, but for his/her future offspring, children, or grandchildren? Can we protect individuals from harm when their genetic test result years later means something else, something very negative, which they could not have possibly consented to? For example, if the gene variant associated with malabsorption of codeine, indicating codeine is ineffective or unsafe for the individual, years later comes to be also associated with very high risk for a lethal disease, given certain environmental exposures, and the individual who had a pharmacogenetic test for treatment purposes then has additional information he/she did not expressly consent to, chooses not to know and is psychologically traumatized.

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