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The Honolulu Advertiser
Posted on: Thursday, July 3, 2008

Cancer study participants' information stolen from car

By Lynda Arakawa
Advertiser Staff Writer

Documents containing names and contact information of nearly 1,000 female participants in two Cancer Research Center of Hawai'i studies were stolen from a worker's car last week, raising concerns from at least some participants.

A Cancer Research Center interviewer was working at Kapi'olani Medical Center for Women & Children on June 24 when her car was broken into, the Cancer Research Center said.

Among the items stolen was a bag containing study materials with the names and contact information — including mailing addresses and phone numbers — of 964 participants in a female human papillomaviruses study and 27 ovarian study subjects, officials said.

The stolen documents did not have participants' Social Security numbers or individual HPV test results, although there were possibly four forms that contained some medical information, said Cancer Research Center spokeswoman Sharon Shigemasa.

"We are devastated by this breach in procedures, since we take the confidentiality of patient information very seriously, and unfortunately there was a lapse in judgment and breach of established procedures," Dr. Marc Goodman, principal investigator of the two studies and Cancer Research Center professor, said in a statement.

Goodman said the center also erred when, in e-mailing participants about the theft, it divulged their names in the group address field.

Katya Boehle, who participated in the HPV study in 2006 while she was a student at the University of Hawai'i, said she's concerned about what someone could do with her and other participants' personal information.

"It was a private study," she said. "It's an HPV study, and even that is kind of a delicate subject. You go in and have a private exam and then to have your information out in public is very concerning. ... Who knows what anyone can do with that should they feel so compelled."

Boehle said she was also upset that the e-mail notifying participants about the theft did not conceal who it was addressed to and that it was sent Friday evening, even though the theft was reported Tuesday.

The center said it is reviewing confidentiality procedures and enforcement and will conduct stringent re-training to prevent a breach from occurring again.

The studies are investigating the causes and prevention of cancer in women. Most of the participants in the studies were healthy women and not cancer patients, the Cancer Research Center said.

Shigemasa said the center notified the University of Hawai'i Committee on Human Studies, which oversees the conduct of clinical trials.

According to the Cancer Research Center of Hawai'i Web site, the female HPV study is funded by the National Cancer Institute and includes a diet analysis and testing for HPV. Because of the success of the initial five-year study and in recognition of its importance, the National Cancer Institute awarded the female HPV study a grant in 2005 to continue another five years, the Web site said.

"We sincerely apologize to our study participants, who provide critical information in our fight against cancer," said Dr. Alan McClelland, Cancer Research Center associate director. "We consider this to be a very serious matter as it concerns a breach of strict regulations and standards in maintaining participant confidentiality. This incident serves as a reminder to all employees who need to have access to confidential participant information about the importance of following security procedures."

Reach Lynda Arakawa at larakawa@honoluluadvertiser.com.