OHSU

[August 17th, 2005] This week's Rogue might have you bringing a wooden stake on your next hospital visit, lest some unauthorized OHSU -backed vampire swoop down to siphon blood.

In 1999, 68-year-old Geraldine DeSylvia was hospitalized at Providence St. Vincent Medical Center for a rare, congenital heart defect. Knowing that researchers wanted to determine the gene responsible for the defect, DeSylvia granted the specific requests of three organizations to receive samples of tissue and blood upon her death. But her daughter says she also specified that Oregon Health & Science University get nothing.

Why? In 1994, DeSylvia's 15-year-old grandson, Mark, died 10 days after doctors at OHSU operating to correct the same defect realized mid-operation that they had a mismatched heart and stopped the transplant. DeSylvia's family settled for $200,000, though she never forgave OHSU, says Denise Valenti, DeSylvia's daughter.

After her mom eventually died in October 1999, Valenti says she then discovered OHSU had obtained blood from her mother without proper permission. OHSU says Valenti had called before her mother's death to ask that Providence draw the blood for potential DNA testing. OHSU contends Providence drew the blood and sent it to OHSU, but acknowledges it came back without the required written informed consent for research (it did come with a clinical informed-consent form).

Valenti decided to let OHSU go ahead with research under two conditions. She wanted to be informed in advance of any papers published as a result, and she wanted to be told whether her own 13-year-old son, who has twice tested negative for the disease, had the same genetic marker. Valenti says OHSU never came through on either count.

Valenti filed a complaint with the federal Department of Health and Human Services last May about how the blood was obtained by OHSU, which denies using the blood for research. Earlier this month, the department ruled that the blood was drawn without obtaining required written consent.