TLDR: Read it. Context is critical here. If it's used as advertised and appropriately voluntary and de-identified prior to being made public, this is very consistent with current practice and medical research.
Turns out I like medical data. I did a few projects while I was in school. One particular interest was pharmacogenomics, the study of how your genetic variations affect various enzymes which break down the drugs we use. People with variations can find themselves at risk for terrible toxicities, or find that their enzymes are so effective they metabolize the standard doses before enough has accumulated to do any good.
Now, if you look at many disease states, you'll find that we don't fully understand everything about what causes them. We end up with long lists of potential risk factors that have been found in surveys of patients over the years. They include "genetic factors" about which we can't identify the specific gene or genes involved or "environmental factors" which again, we can't identify all the specific exposures, nor the doses of those exposures which are dangerous.
In order to understand both of these topics better, there has been discussion for about two decades now, particularly in light of the human genome project, next generation sequencing techniques to make getting full sets of genetic information cost-effective and timely, and the advent of universally available computing power - with these, we have the ability to deal with the kinds of population-level data sets which could help us answer many of these questions. But you have to collect the population-level data.
That's where projects like this come in. Canada's isn't the only one. In the last few days, we had people panicking over the NHANES project here in the US.
Re: the money - when a survey is very long, taking hours of time, it is difficult to get people willing to volunteer. Wouldn't you rather work and make a buck instead of donating your time to answer questions? So, it is standard practice to pay study participants. This is particularly important to ensuring you have a sample that is representative and isn't over represented by affluent people who can afford to donate time for free. It helps correct a sampling bias.
Re: targeting specific communities - typically, these projects are run by professors, MD/PhD types who work at academic medical centers and major universities. These are found in the cities. That means their access to those communities is good, but again, we have a sampling bias of those who choose to live in major metropolitan areas. Typically, your easiest recruitment is of affluent, college-educated white people who happen to be associated with the university or hospitals where the researcher and his colleagues work. If we want a representative sample, we can't expect rural people, especially poor ones to drive to us. We have to go out into the communities we want to study to recruit.
Re: invasive-sounding survey - yup, these projects ARE invasive. This is the goal. It is one of the most aggressive surveys of potential risk factors you can imagine and it is designed that way to provide the data to answer many of the questions I mentioned above. This lady mentions the tap water. Yes, because the pipes in her home may be old and be shedding heavy metals into water. They wouldn't see it if they sampled the treatment center. They have to sample the home. (Hint, hint: NSF. This is how you screen for that damage you just did in Ohio!) As far as I'm aware, a patient can disclose or refuse to disclose whatever portions of the data they wish to. It's not all or nothing, at least, that was the case with the stuff I looked at a few years back.
Re: Public access to the data - YES! This is the whole point! The data will all be de-identified prior to posting which is required by law and not negotiable. But, if I want to download the de-identified data and scan for risk factors for, say, autism spectrum disorder, I can do that. I can search the subset of people with the disease and look for factors within the survey with high % correlation. Want to know if vaccines cause autism? Want to know which ones? You need a survey like this to answer the question. I know what the Danish health service data says about their population. That study has been published. What about the USA or Canada? That's exactly what this survey is intended to help answer. This is the kind of thing that could revolutionize some tricky fields, especially mental health.
I know we deal in conspiracies here, so let's consider the possibility of misuse. This risk comes with any such survey. Identity and information have proven to be very valuable and can be used for nefarious purposes. That's real. It is a threat, and there are evil people out there. So, you determine who you're going to trust. These two particular projects (the Canadian one and the US one I linked) are not putting up red flags to me yet. I don't know of any credible reason to doubt the researchers or their purpose. If you have something meaningful, by all means post it. But the innuendo and fear-driven responses I have read so far do not convince me that there's anything other than advertised going on. Open mind to new data, as always.
I honestly kinda gave up on trying to discuss the realities about medical things on here almost right away. Thanks for doing it right, I’m a huge proponent of knowing what is conspiracy and what is just something you don’t know about, fear of the unknown let’s your brain turn anything into something very scary.
I second this. Us humans tend to jump on anything that confirms what we already suspect, it solidifies the big picture in your mind and shapes your response. This is good - your response to a tractor trailer full of doctors wanting to do things to you might save your life!
But a little discernment is required… the boy who cried wolf was ignored when the true wolf came around…
Oh absolutely, key point to me being some amount of baseline knowledge helps a lot to get past surface level issues with a topic like this post, the devil is in the details as they say.
TLDR: Read it. Context is critical here. If it's used as advertised and appropriately voluntary and de-identified prior to being made public, this is very consistent with current practice and medical research.
Turns out I like medical data. I did a few projects while I was in school. One particular interest was pharmacogenomics, the study of how your genetic variations affect various enzymes which break down the drugs we use. People with variations can find themselves at risk for terrible toxicities, or find that their enzymes are so effective they metabolize the standard doses before enough has accumulated to do any good.
Now, if you look at many disease states, you'll find that we don't fully understand everything about what causes them. We end up with long lists of potential risk factors that have been found in surveys of patients over the years. They include "genetic factors" about which we can't identify the specific gene or genes involved or "environmental factors" which again, we can't identify all the specific exposures, nor the doses of those exposures which are dangerous.
In order to understand both of these topics better, there has been discussion for about two decades now, particularly in light of the human genome project, next generation sequencing techniques to make getting full sets of genetic information cost-effective and timely, and the advent of universally available computing power - with these, we have the ability to deal with the kinds of population-level data sets which could help us answer many of these questions. But you have to collect the population-level data.
That's where projects like this come in. Canada's isn't the only one. In the last few days, we had people panicking over the NHANES project here in the US.
https://www.cdc.gov/nchs/nhanes/participant.htm
Re: the money - when a survey is very long, taking hours of time, it is difficult to get people willing to volunteer. Wouldn't you rather work and make a buck instead of donating your time to answer questions? So, it is standard practice to pay study participants. This is particularly important to ensuring you have a sample that is representative and isn't over represented by affluent people who can afford to donate time for free. It helps correct a sampling bias.
Re: targeting specific communities - typically, these projects are run by professors, MD/PhD types who work at academic medical centers and major universities. These are found in the cities. That means their access to those communities is good, but again, we have a sampling bias of those who choose to live in major metropolitan areas. Typically, your easiest recruitment is of affluent, college-educated white people who happen to be associated with the university or hospitals where the researcher and his colleagues work. If we want a representative sample, we can't expect rural people, especially poor ones to drive to us. We have to go out into the communities we want to study to recruit.
Re: invasive-sounding survey - yup, these projects ARE invasive. This is the goal. It is one of the most aggressive surveys of potential risk factors you can imagine and it is designed that way to provide the data to answer many of the questions I mentioned above. This lady mentions the tap water. Yes, because the pipes in her home may be old and be shedding heavy metals into water. They wouldn't see it if they sampled the treatment center. They have to sample the home. (Hint, hint: NSF. This is how you screen for that damage you just did in Ohio!) As far as I'm aware, a patient can disclose or refuse to disclose whatever portions of the data they wish to. It's not all or nothing, at least, that was the case with the stuff I looked at a few years back.
Re: Public access to the data - YES! This is the whole point! The data will all be de-identified prior to posting which is required by law and not negotiable. But, if I want to download the de-identified data and scan for risk factors for, say, autism spectrum disorder, I can do that. I can search the subset of people with the disease and look for factors within the survey with high % correlation. Want to know if vaccines cause autism? Want to know which ones? You need a survey like this to answer the question. I know what the Danish health service data says about their population. That study has been published. What about the USA or Canada? That's exactly what this survey is intended to help answer. This is the kind of thing that could revolutionize some tricky fields, especially mental health.
I know we deal in conspiracies here, so let's consider the possibility of misuse. This risk comes with any such survey. Identity and information have proven to be very valuable and can be used for nefarious purposes. That's real. It is a threat, and there are evil people out there. So, you determine who you're going to trust. These two particular projects (the Canadian one and the US one I linked) are not putting up red flags to me yet. I don't know of any credible reason to doubt the researchers or their purpose. If you have something meaningful, by all means post it. But the innuendo and fear-driven responses I have read so far do not convince me that there's anything other than advertised going on. Open mind to new data, as always.
I honestly kinda gave up on trying to discuss the realities about medical things on here almost right away. Thanks for doing it right, I’m a huge proponent of knowing what is conspiracy and what is just something you don’t know about, fear of the unknown let’s your brain turn anything into something very scary.
I second this. Us humans tend to jump on anything that confirms what we already suspect, it solidifies the big picture in your mind and shapes your response. This is good - your response to a tractor trailer full of doctors wanting to do things to you might save your life!
But a little discernment is required… the boy who cried wolf was ignored when the true wolf came around…
Oh absolutely, key point to me being some amount of baseline knowledge helps a lot to get past surface level issues with a topic like this post, the devil is in the details as they say.
Ok. Fine. In a perfect world. But lets add some context here. THEY ARE TRYING TO KILL US!