Professional Perspective

Individuals and families who have the VHL gene, or have a chance of having the VHL gene, face many important life decisions, one of which deals with choices concerning pregnancy and childbearing. This issue of the VHL Family Forum presents a broad array of choices and decisions faced by members of the Alliance. Individuals deal with this decision much as they face other important decisions in there lives. Some individuals face the decision easily, with certainty, while others need much more information before they can begin the decision-making process. Some stay for long periods of time with uncertainty. Family members and health care providers need to understand and respect the variety of ways each person chooses to deal with their personal decision-making.

The stories presented here, sometimes with altered names to protect the identities of the authors, are a sampling of the kinds of issues and decisions families have faced. Decisions about childbearing are some of the most personal and private decisions one makes, and this privacy must be respected. Much as other family members want to know the choices a relative has made about childbearing, or DNA testing, the privacy of these decisions must be respected.

As a genetic counselor, I have seen many decisions, changes in decisions, and delayed decisions. Each person needs to have time, and accurate information, to help make these personal choices. As a genetic counselor, the relaying of medical facts and risk figures is only one part of the process, helping individuals and families interpret the information and helping facilitate individuals' decision-making is another, more complex part. These stories can help us all understand, empathize with, and support others who have faced decisions about childbearing and VHL.