If you have recently visited your health care provider, it has probably already happened to you. So what is it? A genetic diagnosis. Over the next ten years, they will be given more frequently. At present, pregnant women are routinely given genetic diagnoses in what is called multiplex testing for fetal anomalies. Most newborns are screened for genetic anomalies such as PKU (phenylketonuria), and with greater regularity children and adults can be genetically tested for diseases ranging from cystic fibrosis to Huntington's disease. But with this genetic information, patients' anxieties soar and soul-searching questions begin. Why me? Am I being punished? Should I abort or conceive ever again? Should I test my children? Should I tell anyone? How do I live with this diagnosis?

The problems get worse. With a tidal wave of new genetic technologies, people are overloaded with information about present and expected future health. Some will learn that they can pass along to their children a condition, such as sickle cell anemia, but not suffer from it themselves. Others will discover that in later life they will express genetic conditions, such as adult polycystic kidney disease or Huntington's disease. Still others will discover they have a small susceptibility to specific diseases, such as breast cancer and Alzheimer's disease. Whatever genetic information is available, expect it to be voluminous and confusing. Add to this picture the most important ingredient: a volume of genetic information that outpaces the number of counselors trained to provide essential education for those undergoing tests. (Currently there are 1,600 genetic counselors. Only an additional 120 join their ranks each year.) Who will be there for the overwhelmed patients who fret, probe, and suffer?

All this genetic information will force the question of whether there are less traditional ways to provide genetic information and related counseling services. Congregational clergy, rabbis, hospital chaplains, and non-ordained religious workers may be called on to play a critical role in new service models. Already they are strategically positioned to do so: there are more of them and they spend their days addressing pastoral questions, like those above, occasioned by genetic information. Pastoral counselors acknowledge, however, that they are not professionally prepared to understand or interpret genetic information. It is also unclear whether or how health care professionals currently rely on pastoral counselors in genetic counseling. What roles if any should clergy play in the genetic counseling process? If they should play a role, how should they prepare?

To better understand the role that pastoral counselors do and should play, the Park Ridge Center has received an eighteen-month grant from the National Center for Human Genome Research of the National Institutes of Health. The project aims to identify and analyze the nature and extent of the pastoral counselor's role in genetics counseling, as understood by genetic counselors and other health care professionals. Through a series of national focus group interviews with a variety of health care professionals on the front lines of genetics testing, the research will:

• Identify the extent and nature of pastoral counselors' involvement with genetics related issues;
• Uncover the religiously relevant issues raised in the process of pastoral counseling around genetic testing and treatment;
• Explore how pastoral counselors might help individuals understand and cope with the religious issues that may arise in the course of genetic testing and treatment;
• Name the knowledge and skill competencies that are necessary for pastoral counselors to be effective in genetics cases;
• Pinpoint the institutional and professional dynamics that prevent or encourage pastoral counselors'involvement in the genetic counseling process.

The project will report on the current roles pastoral counselors play, the ideal roles they could play, and the ways in which institutional and professional practices can respond to the religious issues that are raised in connection with genetic testing and therapies. It will also lay the foundation for a curriculum to equip those who teach pastoral counselors.

Stay tuned!