Ethics and human genetics.

Abstract

Genetic discoveries during the past half-century and their potential applications to engineer or bring about deliberate genetic changes in plants, animals, and human beings have raised a series of ethical and theological issues. The explosion of knowledge about the biological basis of life has been further accelerated by the inception of the Human Genome Project (HGP), a $3 billion initiative begun in 1998 to map and sequence the human genetic code and to identify the 4,000 genes whose defects are assumed to be the cause of genetically based diseases. To respond to public concerns about the project, Congress allocated three percent and then five percent of the HGP's budget for research on the ethical, legal, and social implications of the human genetics revolution. A working group overseeing this funding identified nine topics deemed to be of particular importance, among them: fairness in the use of genetic information with respect to insurance; the impact of knowledge of genetic variation on the individual, including issues of stigmatization and impact on self-image; privacy and confidentiality of genetic information and related consent issues; impact on genetic counseling and reproductive decisions influenced by genetic information; questions raised by the commercialization of the products from the project; and conceptual and philosophical implications on the concept of human responsibility and the issue of free will versus determinism.1 That the genetics revolution raises major questions for the religious community was quickly recognized. Some early reflections by moral theologians, such as Karl Rahneri and Paul Ramsey,3 reflect a diffuse sense of unease or anxiety about genetic engineering and the implications of altering the genetic basis of life. Like many of the religious writings that followed, these ethicists raised, but did not resolve, questions about the appropriate limits of human intervention into the Creation and the basis of making such a determination. Other writers have acknowledged that"[D]evelopments in genetic science and technology compel our