20 May 2007, ST
I see the greater good in doctors sticking wires and needles in me, all in the name of science
By Chua Mui Hoong
I USED to think only desperately ill people with no choice opt to be guinea pigs in medical trials.
You know, that you have to be gaunt, dying, in pain, with no other recourse, before you would sign up for some untested treatment that may or may not help you.
Then I became a guinea pig myself, when undergoing cancer treatment in Boston five years ago.
And I realised two things: that you don't have to be desperate to consent to be a subject in a clinical trial. And that, hey, some of it can be downright fun.
At that time, I was a graduate student at Harvard, just 20 minutes away from one of the top-ranking cancer centres in the United States.
The centre is chock-full of clinician-scientists doing 'translational research', a term that I've begun to see more frequently in Singapore nowadays, but which was already bread-and-butter for the Dana Farber Cancer Institute back in 2002.
I was approached to do no less than three clinical trials and said 'yes' to all.
The first was serious. It gave me access to a new, promising drug called herceptin. Later, as I read more about the drug, I felt truly proud to have participated in a piece of medical history.
For the herceptin trial for breast cancer patients was part of a worldwide network of clinical trials on the drug that would yield striking results.
All sorts of doctors all over the world, including in Boston and Singapore, were collaborating to find out how effective the drug was against late-stage breast cancer, against early-stage breast cancer, what combination of drugs make it most effective, how much of it should be given, how frequently, and for how long.
For a few years after my treatment, I would follow news from the annual conference of the American Society of Clinical Oncologists religiously, knowing there would be some new study, some new insight, new information, from the wide-ranging herceptin trials.
Another clinical trial I took part in was a bit more painful. It involved having a wire-guided biopsy, which meant having a wire inserted into the breast (ouch).
I don't remember the details, but I recall I was sold on it when the doctor explained that if the trial worked and the wire helped locate the tumour accurately, it meant women in future may not need to undergo painful mammograms immediately after surgery.
I decided to be heroic. I also liked the radiologist, who said he read mammography films with his breakfast (the way I read The Straits Times with mine). I agreed.
Then there was the fun trial, to see if relaxation techniques help reduce patients' stress after surgery.
It involved having a very nice young research assistant sit by me and hold my hand before any surgical procedure. She would talk to me in a soothing tone, and ask me to visualise being on a beach, in the forest, or some such relaxing place. I would fill up questionnaires on my state of mind before and after.
For a few weeks after that, I had to take cheek swabs that would measure my stress levels, and send them in large envelopes to the laboratory. I never thought anyone would be interested in my saliva!
I said yes to all three trials for various reasons: to gain access to a promising new drug; because taking part in them didn't seem to hurt me much but may help others in future.
Underlying all these reasons, the culture of the hospital also mattered a great deal.
I had opted out of the university hospital to be treated here, at a cutting-edge cancer research centre. I knew the treatments I benefited from were built on the efforts of past generations of patients, doctors and benefactors. It felt natural to contribute my bit to this virtuous cycle.
Also, I trusted my doctors. Indeed, I rather liked the idea of being treated by doctors like the radiologist so interested in their work, their idea of breakfast reading is scanning mammogram films.
Most importantly, I had faith that the research process would safeguard my interests.
For example, that my privacy would be assured, that insurance companies won't get hold of my data, and that if initial findings uncovered something wrong with the drug I was on, that I would be told, and the trial stopped.
This last aspect - faith in the process - is crucial in Singapore's attempt to change mindsets to get Singaporeans to be more receptive to taking part in clinical trials, which is a necessary precondition to the Republic becoming a biomedical hub.
The Health Ministry is currently working to make medical records electronic and more easily accessible for good health planning.
A recent report recommends giving medical researchers easier access to patient information, but with controls put to safeguard privacy.
My antenna went up at the first bit: make it easier for researchers to access information? We all know how leaky and gossippy Singapore is, how much it resembles a close-knit village and not an anonymous urban metropolis.
Do you want any researcher who may or may not be a doctor, to be able to find out things about you?
But the second bit was more reassuring: about privacy protocols.
From what I understand, the idea is to make it easier for researchers to get hold of medical information, without them being able to figure out who the patient is.
This way, aggregate data on diseases and patients can be built up and shared easily without patients' consent having to be sought for every bit, and yet not compromise patient confidentiality.
As is well known, Singapore has no laws, and little tradition, to safeguard privacy. If anything, the need for public health or public safety will always trump the individual's right to privacy.
That being the case, more needs to be done to assure Singaporeans that their privacy will be safeguarded, and that, even when they sign up to be guinea pigs, their interests will be safeguarded.
I see the greater good in doctors sticking wires and needles in me, all in the name of science
By Chua Mui Hoong
I USED to think only desperately ill people with no choice opt to be guinea pigs in medical trials.
You know, that you have to be gaunt, dying, in pain, with no other recourse, before you would sign up for some untested treatment that may or may not help you.
Then I became a guinea pig myself, when undergoing cancer treatment in Boston five years ago.
And I realised two things: that you don't have to be desperate to consent to be a subject in a clinical trial. And that, hey, some of it can be downright fun.
At that time, I was a graduate student at Harvard, just 20 minutes away from one of the top-ranking cancer centres in the United States.
The centre is chock-full of clinician-scientists doing 'translational research', a term that I've begun to see more frequently in Singapore nowadays, but which was already bread-and-butter for the Dana Farber Cancer Institute back in 2002.
I was approached to do no less than three clinical trials and said 'yes' to all.
The first was serious. It gave me access to a new, promising drug called herceptin. Later, as I read more about the drug, I felt truly proud to have participated in a piece of medical history.
For the herceptin trial for breast cancer patients was part of a worldwide network of clinical trials on the drug that would yield striking results.
All sorts of doctors all over the world, including in Boston and Singapore, were collaborating to find out how effective the drug was against late-stage breast cancer, against early-stage breast cancer, what combination of drugs make it most effective, how much of it should be given, how frequently, and for how long.
For a few years after my treatment, I would follow news from the annual conference of the American Society of Clinical Oncologists religiously, knowing there would be some new study, some new insight, new information, from the wide-ranging herceptin trials.
Another clinical trial I took part in was a bit more painful. It involved having a wire-guided biopsy, which meant having a wire inserted into the breast (ouch).
I don't remember the details, but I recall I was sold on it when the doctor explained that if the trial worked and the wire helped locate the tumour accurately, it meant women in future may not need to undergo painful mammograms immediately after surgery.
I decided to be heroic. I also liked the radiologist, who said he read mammography films with his breakfast (the way I read The Straits Times with mine). I agreed.
Then there was the fun trial, to see if relaxation techniques help reduce patients' stress after surgery.
It involved having a very nice young research assistant sit by me and hold my hand before any surgical procedure. She would talk to me in a soothing tone, and ask me to visualise being on a beach, in the forest, or some such relaxing place. I would fill up questionnaires on my state of mind before and after.
For a few weeks after that, I had to take cheek swabs that would measure my stress levels, and send them in large envelopes to the laboratory. I never thought anyone would be interested in my saliva!
I said yes to all three trials for various reasons: to gain access to a promising new drug; because taking part in them didn't seem to hurt me much but may help others in future.
Underlying all these reasons, the culture of the hospital also mattered a great deal.
I had opted out of the university hospital to be treated here, at a cutting-edge cancer research centre. I knew the treatments I benefited from were built on the efforts of past generations of patients, doctors and benefactors. It felt natural to contribute my bit to this virtuous cycle.
Also, I trusted my doctors. Indeed, I rather liked the idea of being treated by doctors like the radiologist so interested in their work, their idea of breakfast reading is scanning mammogram films.
Most importantly, I had faith that the research process would safeguard my interests.
For example, that my privacy would be assured, that insurance companies won't get hold of my data, and that if initial findings uncovered something wrong with the drug I was on, that I would be told, and the trial stopped.
This last aspect - faith in the process - is crucial in Singapore's attempt to change mindsets to get Singaporeans to be more receptive to taking part in clinical trials, which is a necessary precondition to the Republic becoming a biomedical hub.
The Health Ministry is currently working to make medical records electronic and more easily accessible for good health planning.
A recent report recommends giving medical researchers easier access to patient information, but with controls put to safeguard privacy.
My antenna went up at the first bit: make it easier for researchers to access information? We all know how leaky and gossippy Singapore is, how much it resembles a close-knit village and not an anonymous urban metropolis.
Do you want any researcher who may or may not be a doctor, to be able to find out things about you?
But the second bit was more reassuring: about privacy protocols.
From what I understand, the idea is to make it easier for researchers to get hold of medical information, without them being able to figure out who the patient is.
This way, aggregate data on diseases and patients can be built up and shared easily without patients' consent having to be sought for every bit, and yet not compromise patient confidentiality.
As is well known, Singapore has no laws, and little tradition, to safeguard privacy. If anything, the need for public health or public safety will always trump the individual's right to privacy.
That being the case, more needs to be done to assure Singaporeans that their privacy will be safeguarded, and that, even when they sign up to be guinea pigs, their interests will be safeguarded.
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