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March 14, 2000

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Genetic Risk of Kidney Disease: Is Advance Knowledge A Good Thing

With the Human Genome project nearing completion, it will soon be possible to identify people genetically at risk for certain diseases. But what are the emotional and ethical implications for those on the receiving end of such news? That's the subject of a study by a team of researchers that includes Dr. Rosalie Starzomski of UVic's school of nursing. The focus of the study is people affected with polycystic kidney disease and their family members, as well as health care providers caring for these individuals and families. Autosomal dominant polycystic kidney disease (ADPKD) is the most common life-threatening genetic disorder in Canada. It typically strikes adults, causing progressive enlargement of the kidneys as normal tissue is replaced by abnormal fluid-filled cysts. These cysts may also be present in the liver, pancreas and spleen. Approximately eight to 10 per cent of all patients who require dialysis and/or a kidney transplant have ADPKD.
"We don't usually do genetic testing yet in B.C. and we want to investigate ahead of time what the effects of such testing might be," says Starzomski. "What would it mean to a teenager to learn she is genetically at risk? What would an employer do with this information?"
Starzomski and her fellow researchers are conducting individual interviews and including health care providers in focus groups to discuss future care methods of those with ADPKD. The study is funded by the Kidney Foundation of Canada.
It is currently Kidney Foundation Month in B.C.
  Media Contacts:
Dr. Rosalie Starzomski (nursing) at (604) 323-5922.

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