Several years ago I volunteered to participate in the Ontario Health Study (OHS), though I can’t recall the specific impetus. But I am one of 225,000 who did.
About the Study
OHS is a longitudinal study that tracks its participants over a long period of time, likely decades. The study is investigating the risk factors that contribute to contracting diseases like cancer, diabetes, heart disease, and Alzheimer’s. Potential risk factors could come from individual behaviour (smoking, stress, addiction) or the physical environment (exposure to air pollution).
The study facilitates controlled experiments by comparing people in the sample who develop a disease with those who don’t. Controlled experiments are the gold standard in scientific research and essential for the validity of the findings.
Also essential to the study design is the large sample of 225,000. The fast facts about the study show that there were thousands of cases of diseases and conditions when participants entered the study (the baseline) as well as thousands of new cases.
The sample of 225,000 is not exactly representative of the Ontario population. Women are over-represented and whites over-represented relative to Asians, blacks, and indigenous Canadians. But this is a health study not an election. The large sample size means that there should be enough men, Asians, blacks, and indigenous Canadians participating to draw conclusions about them.
The Bloody Part
I initially participated in the study by completing questionnaires. I hadn’t participated for a few years until there was a new questionnaire about Covid 19 that asked about underlying health conditions, risk factors, Covid’s impact on health, testing, and exposure. A subset of 12,000 people who completed the questionnaire were asked to provide a blood sample to test for the presence of antibodies.
I was asked to be part of the subset. This involved using a lancet to puncture a finger; the lancet goes deeper than the surface and is not painful. From the puncture, I provided 5 drops of blood on a treated paper, which I packaged as instructed, and mailed to a laboratory at the U. of T. It happens that I participated five days after receiving my first dose of the Pfizer vaccine, so I will be interested – like the researchers – in the antibodies I develop. I will find out in several months.
The Big Picture
The privacy of personal data is a hugely controversial issue. It turns out that the night before I took the sample I listened to Harvard Professor Shoshana Zuboff giving a presentation about the evils of what she has termed Surveillance Capitalism, which uses data we generate, often unknowingly, to monitor us for profit (the corporation’s, not ours).
What I am doing is different. I am knowingly volunteering my data to bona fide researchers to better understand illnesses and prevent them. Trusting that the researchers will keep participants’ identity confidential, I am pleased to give them my data.
This episode reminds me of the long form Canadian census, a controversial issue several years ago. It happened that I received the long form census in 2016. It took a while to complete and asked about many things, including health issues in my family and the value of our house (always a hot topic in Toronto). I would have gladly volunteered the information, but I was delighted to have been compelled to do so, just as others were.
I share Zuboff’s reluctance to give my data to business for its profit, but I am willing to give it to the public sector if it can contribute to better public policy and public health.