You might not know it, but that sample of blood you've given at community health screening clinic to test for a possible genetic link to high cholesterol levels might also reveal a gene that could lead to irreversible heart disease.
If that information is made available to a life insurance company, it could come back to haunt you. The insurance company could hold back benefits if it can prove the patient failed to disclose he knew he had inherited that disease-causing gene.
Kuo Hsing-Kuo, an associate professor in anatomy and histology at UNBC's Northern Medical Program, doesn't want to discourage people from taking part in medical studies now ongoing in our region's hospitals. But they should be aware of what they are getting into and who they can consult to have their questions answered.
Every year, close to 100 medical research studies are undertaken in Prince George, involving 2,000 patients annually. As chair of the research ethic board at the Providence Heath Care Research Institute at St. Paul's Hospital in Vancouver, Hsing-Kuo oversees more than 500 research projects every year. He also sits on the research review committee of the Northern Health Authority, and also served on UNBC's research ethic board.
"There's nothing wrong with medical research, but we need to educate our community so they understand their rights and they know when they need ethical support," said Hsing-Kuo.
"If there is some type of health issue at a community event and the person tries to recruit the participant there, that is against our health care regulations. If there is a screening for some disease and the result comes up positive, what are [researchers] going to do about that? Can you just contact the participant? They might not be aware of their rights.
"Unfortunately, the people in the north don't know when to say 'no' and when to ask for support."
Hsing-Kuo said doctors are to blame if patients are not informed of their roles in research. Sharing of patient information should only be allowed if the individual gives permission. Use of that information must be fully explained to the patient and voluntarily agreed to. Patients have the right to withdraw from studies at any time without discrimination. For genetic tests, counsellors should be made available to provide information on treatment options, long-term prognosis, and how family members could be implicated. He said patients who are unsatisfied with the process can turn to the UNBC research ethic board and Northern Health research review committee for help.
The B.C. Cancer Agency is building a new cancer clinic in Prince George and there's a growing field of research that will be dependent on the co-operation of patients. Hsing-Kuo said now is the time to raise public awareness of the rights of northern B.C. patients to make sure they ask questions on what research data will be gathered and how that information will be used. They need to know the established research guidelines for recruiting, supporting and protecting patients.
Motivated by profits, Hsing-Kuo said there's real potential for breeches of ethics at privately-owned medical labs, which could receive samples for testing a certain condition and use those same samples to conduct other genetic tests.
"If a doctor or a researcher has information, a patient can choose they don't want to know, and then the company can't do anything," Hsing-Kuo said. "But if the patient says they would like to know there's nothing wrong, out of curiosity, that could cause potential harm. The physicians have to let the patient know if the result will help your current situation or harm you later.
"Most likely, all the medical research will be fine and the participant will benefit. It might not help you directly, but it may contribute to the critical outcomes in the future."
The ground rules on research ethics are not a topic covered in all medical schools. But all graduates of the Northern Medical Program at UNBC are well-versed in the subject.
"A lot of the time, even the so-called top-notch doctors sometimes have no idea how to recruit a patient ethically, and that's not really their fault, it's because of their medical education," said Hsing-Kuo. "We are lucky in the Prince George program these young doctors understand how to recruit patients, how to conduct research and how to prevent the harm that's related to it."
Kuo teaches in Prince George two days per week. He would like to offer his ethics instruction to doctors in training at UBC, but said the Vancouver program has too many students (132) to make that possible. Enrollment in the NMP is capped at 32 students.