We humans tend to worry first about our own happiness, then about our families, then about our communities. In times of great stress, such as war or natural disaster, we may focus temporarily on our country but we rarely think about Earth as a whole or the human species as a whole. This narrow perspective, perhaps best exemplified by the American consumer, has led to the environmental degradation of our planet, a grossly widening gap in living standards between rich and poor people and nations and a scientific research agenda that focuses almost exclusively on the needs and desires of the wealthy few. Reversing the worldwide trends toward market-based atomization and increasing indifference to the suffering of others will require a human rights focus, forged by the development of what Vaclav Havel has termed a “species consciousness.”

Imagine a world in which parents can genetically enhance their child's height so that he becomes a professional basketball player. Or imagine a law school student preparing for the bar who takes out an extra loan to genetically enhance his intelligence. What if going to your physician for a routine physical included the option of genetically enhancing any trait you desired? And what if such a practice was expensive and, therefore, only available to the privileged members of society? Is this desirable or should the U.S. government ban genetic enhancement? What if the government bans it and citizens travel abroad to receive genetic enhancement treatments? Can the U.S. government do anything to prevent access to illegal genetic enhancement abroad?

Many of the societal challenges associated with the genetic revolution rest on predictions about the effects of the future development and diffusion of technologies for manipulating the human genome. Identity testing is different. Relatively sophisticated techniques for identity testing using DNA currently exist, and these techniques are already creating conflicts and challenges for families and policymakers. More precisely, scientific advances and social trends are raising difficult questions about the source and nature of parental obligation, the steps required to protect the privacy of individuals when suspicion begins to corrode family relationships and the role of attorneys and other professionals in these volatile situations.

By now everyone is familiar with the recent accomplishments of the Human Genome Project. Accomplished in ten, rather than the initially expected fifteen, years, the human genome has been fully sequenced. Genetics is in its golden age. A product of the technology era, genetics has, in a short time, offered vast amounts of information. This increased knowledge promises potential benefits for our understanding of the disease process and, ultimately, treatment and prevention. The rapid flow of information, however, presents complications and challenges. It can complicate the decision making process for those involved in genetic testing, not only because our knowledge of genetics is more complex, but because there is so much more potential information to obtain. The sheer quantity of information for both researcher, clinician and especially patient, can be overwhelming. In addition, our ability to glean predictive or susceptibility information has vastly exceeded our ability to develop cures for diseases; patients can increasingly identify risks for conditions that they can do little to avoid.

In justifying the cost of the Human Genome Project, supporters predicted fantastic benefits would result from decoding the human genome: cures for fatal diseases, effective treatments for common illnesses burdening individuals and society and a greater understanding of ourselves as human beings. Fear that genetic information will be misused to harm individuals, however, casts a shadow over this glowing portrait of the future of genomic medicine. Over the last decade, these concerns have led approximately twenty-six states to enact genetic nondiscrimination laws. Although no similar law has been passed by Congress, many, including Francis Collins, Director of the National Center for Human Genome Research, have repeatedly endorsed proposed federal legislation aimed at prohibiting health insurers and employers from using predictive genetic information. The result has been growing bipartisan support for The Genetic Nondiscrimination in Health Insurance and Employment Act introduced in February of 2001 by Representative Louise Slaughter in the House and by Senators Kennedy and Daschle in the Senate.

The science of genetics holds great promise. Ideally, the more scientists learn about the human genome and the functions of specific genes, the better they will understand what causes disease, what can prevent disease and what can cure it. But the hoped for advances in medicine that genetics may bring about will never happen if people are afraid to provide their DNA and work with scientists and doctors on the necessary research. From a privacy perspective, two things are clear: 1) people are afraid of genetic testing and 2) genetic information has been used to hurt people, rather than to help them.

Perceived threats to medical privacy arouse intense emotion, even among those who might otherwise approach complex health policy issues with academic dispassion. The author of an August 2001 editorial in the New England Journal of Medicine describes medical records as “sacred secrets,” and decries the use of medical information for purposes unrelated to patient care as “an abridgement of individual rights” and “an unfolding American tragedy.

In civilian life, an individual has the right to refuse medical treatment in almost any circumstance. While a patient who refuses treatment may face adverse consequences such as prolonged illness, our society recognizes the importance of individual choice in health matters. Members of the military, however, enjoy no such right. Service members are required to submit to certain medical treatments as a part of their employment contract. Refusing such treatments is disobeying an order, and the service member then faces the prospect of a dishonorable or “other than honorable” discharge, and even imprisonment. Disobeying an order to receive treatment can thus result in the equivalent of a felony conviction on the individual's employment history forever.