Genetic counselors can help to inform patients about the genetic basis of illness. They provide patients with the information necessary to make decisions, including decisions about genetic testing- just one of the ethical issues explored in the Genetics and Society Topic Room.
Scientific advances and the ways they may be used are often unfamiliar to us and may even be frightening. Consider the possibility of genetically engineering humans to enhance desirable traits, or perhaps taking a test that provides you with a list of diseases you are likely to develop in the future. New technologies such as these are often developed before we can integrate them into our lives in a meaningful way, thereby generating a need for open discussion of what is ethical, what society deems acceptable or unacceptable, and what legal protections are required to ensure that we are safe from harm.
This topic room covers the ethical, legal, and social implications (ELSI) of genetic advances and their applications. To lay a foundation for ELSI discussions, the room begins with information regarding the meaning of disease, including the unique issues encountered in genetic diseases and the profound impact genetic conditions have at the individual, family, and societal levels. Here, you will learn not only about traditional single-gene diseases and the medical professionals who specialize in seeing patients with these conditions, but you'll also explore some of the newer applications of genetic information to disease and health care, including direct-to-consumer testing for multifactorial disorders. Such applications continue to evolve as researchers discover more about the role of genes in common disorders and as consumers play a growing role in the management of their own health.
Next, the topic room turns to a number of ethical issues associated with the acquisition and use of genetic information. Random House Unabridged Dictionary defines "ethics" as both "a system of moral principles" and "the rules of conduct recognized in respect to a particular class of human actions or a particular group, culture, etc." Ethical principles are the foundation of a civilized society, but who decides what constitutes a moral principle or a societal rule of conduct? We all can and should play a part in such discussions, and this topic room is designed to make you think about the many sides of current topics in genetic disease and the uses of genetic technology. Some controversial topics covered in this room include gene patenting, novel approaches to treatment, use of personal genetic information in forensics, and gene doping in sports. It is important to note that what is considered ethical depends on various factors and may even change. For instance, ethics may be based on the recommendations of thought leaders and possibly even based on misunderstandings regarding science and biology, as was the case in the eugenics movement that swept the United States in the early twentieth century. Impassioned ethics discussions are to be expected and encouraged when an unfamiliar concept is introduced to a community or culture, as in the case of using genetic techniques to enhance favorable traits in adults or to select for certain characteristics in human embryos. In fact, it is through such discussions that a society may come to agreement regarding the principles and rules it abides by.
In some instances, however, moral principles are not sufficient, and the public needs formal protection from harm. In these cases, discussions of ethics and a consensus regarding what is right lead to policies and government regulations—this is the legal aspect of ELSI. For example, in the case of genetic discrimination, the threat of losing one's insurance or employability was thought to be so great that Congress passed the Genetic Information Nondiscrimination Act, which was signed into law by President Bush in 2008. Various laws and regulations also govern access to testing and participation in research studies. Again, society and ethical norms come into play when determining when and how the government must intervene.
Thus, while breakthroughs in science may be exciting, they can also create dilemmas for both individuals and society. This topic room is intended as a place that stimulates you to think about these issues and discuss them with others. Through such discussions, you too can have an impact on what is considered ethical and acceptable to society when it comes to genetics and its many applications.References and Recommended Reading
Dictionary.com. Dictionary.com Unabridged (v. 1.1). Random House, Inc. (accessed September 03, 2008)
