Vol. 18: Fall, 2000
Consumer Issues in Genetics
Clergy Response to Genetic Issues in Counseling
Pastoral Genetic Testing
Editor’s Note: The increasing complexity of medical genetics issues requires patients to turn to professionals in many areas to gather enough information to make informed healthcare decisions. Increasingly, genetic counselors are required to give patients insight into not only the physiological implications of issues in genetics, but also the psychological, sociological and emotional factors, which must be taken into account when patients are challenged by a genetics-related medical issue. The following commentary reflects the experience of a genetics counselor who is also a member of the professional clergy.
What consolation can you offer a childless couple in their early forties whose longed-for child, at 35 weeks of gestation, has been diagnosed with an extra copy of chromosome 18 (too much genetic material) that causes severe mental retardation, multiple physical (especially heart and respiratory) problems, and death 90 to 95 percent of the time before the child reaches the age of one? Suppose they come to you wanting help deciding how much care to plan on providing for their child given this condition-assuming she or he doesn’t die in the womb. Could you advise them?
Now change the scenario a bit. What if it were a couple in their mid-thirties whose first pregnancy was very difficult, but successful: they have a beautiful, 20-month-old baby girl. But now, at 18 weeks of gestation, their second pregnancy goes awry. Prenatal diagnosis reveals that the developing baby has a open neural tube defect and hydrocephalus (fluid build-up in the brain) so serious that the baby -- if it makes it to birth -- will almost certainly be faced with paraplegia, loss of bladder and bowel control, and a less than 10 percent chance of even borderline reasonable intellectual functioning, not to mention a host of elaborate surgeries. How would you counsel this couple should they tell you they are seriously considering terminating this pregnancy, due to the exhausting nature of the care of this baby would require and its likely toll on the family structure? Suppose they do so; would you be able still to celebrate the loss of this very-much-wanted child with some form of liturgy?
Almost weekly reports in the news media of genetic advances can leave us with the impression that cures for genetic disorders are virtually at hand. I do not want to dismiss the import of the Human Genome Project or of the various gene therapy trials that are currently taking place (and receiving intense scrutiny because of a recent protocol-related death). But the reality of the current practice of clinical medical genetics is far different. What genetic testing and diagnosis offers today is still predominantly information. Families and individuals must then struggle with the burdens and benefits that information poses to the well being of their offspring and themselves.
Cases like the ones above have been part and parcel of my work in La Jolla for the past year or more. Most of the couples that I see are referred by genetic counselors in San Diego and Orange counties. These referrals have been enormously provocative and representative of the range of complex issues raised by modern genetics.
Contributed by Peter Abdella, M.S.
The Genetic Drift Newsletter is not copyrighted. Readers are free to duplicate all or parts of its contents. The Genetic Drift Newsletter is published semiannually by the Mountain States Regional Genetic Services Network for associates & those interested in Human Genetics. In accordance with accepted publication standards, we request acknowledgement in print of any article reproduced in another publication. The views expressed in the newsletter do not necessarily reflect local, state, or federal policy. For additional information, contact Carol Clericuzio, M.D., Editor, Department of Pediatrics, The University of New Mexico, Albuquerque, NM, 87131
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