How biobanks are revolutionizing medical research — and why Canada needs one for Lyme disease

We’ve all heard of the big advances in early detection of disease and the targeting of treatments tailored precisely to patients’ genetic profiles — in fact, many of these new techniques might have already saved the lives of our friends and loved ones — and even our own.

But what’s much less well-known is a growing phenomenon that’s helping to drive breakthroughs in biomedical research. It’s called biobanking —  the collection of large quantities of samples like blood, tissue, bone marrow, urine and DNA, along with the gathering of associated patient data. Researchers from many institutions can then use these resources to help find new screening methods, treatments, cures and ways to prevent a wide range of diseases. 

There are thousands of biobanks around the world. Some are small collections of samples and data while others are massive, such as the UK Biobank, which is described on its website as “the most comprehensive and widely used dataset of its kind.”

Some of the most intriguing work associated with biobanks is taking place right here in this country. “It’s amazing and so exciting to see what is happening everywhere, and it’s happening right here in universities across Canada,” says Dr. John McLaughlin, a professor emeritus of epidemiology at the University of Toronto’s Dalla Lana School of Public Health and former chief science officer for Public Health Ontario.

McLaughlin, who is on the Canadian Lyme Disease Foundation’s Advisory Council, was instrumental 25 years ago in establishing Canada’s largest biobank, the Canadian Partnership for Tomorrow’s Health, also known as CanPath, which has gathered samples and data from more than 330,000 Canadians so far. 

CanPath and biobanks like it enable research “that was never before possible in Canada because the appropriate type of data did not exist,” says McLaughlin, who recently retired as CanPath’s director.

“I absolutely adore seeing young people — some of them are graduate students or trainees in various research institutes — who are able to do work that was previously impossible even for their professors,” he adds.

“They’re actively generating new findings that are immediately innovative and exciting.”

Discoveries driven by biobanks

McLaughlin points to several advances that CanPath’s data helped generate, including work led by Dr. Jennifer Brooks that aims to improve breast cancer screening.

He also cites biomarkers discovered in blood samples collected many years before a person’s disease, such as cancer, has occurred in a study by recent PhD graduate Dr. Nick Cheng under the supervision of Dr. Philip Awadalla, and groundbreaking work on the health effects of air quality, specifically on arthritis, led by Dr. Sasha Bernatsky and Dr. Trevor Dummer. 

In the United States there are many examples of biobanks, including one dedicated to Lyme disease. Based in the San Francisco Bay Area, it includes eight sites across the country. Its samples and data are available to researchers outside the U.S., including Canadians.

But McLaughlin believes Canadian Lyme disease researchers would benefit by working together to establish a biobank that makes data and biospecimens from across the country available to scientists at institutions throughout Canada. 

“(Lyme disease) is a rapidly evolving situation in Canada, it is not going to disappear, and there is an urgent need for solid evidence that meets the needs of Canadians,” he says.

How a Canadian Lyme disease biobank could spur research

Lyme disease is the most common vector-borne illness in Canada. It is caused by bacteria carried by ticks that pass the pathogens on when they bite other animals and humans. Climate change has helped these ticks multiply and increase their range in various parts of Canada, most notably the Maritimes and the southern regions of Ontario, Quebec, Manitoba and British Columbia.

According to the Public Health Agency of Canada, the provinces and territories have reported more than 27,000 cases of Lyme disease between 2009 and 2024. But one study performed in New Brunswick in 2018 suggests the actual number is at least 10 times higher, both in that province and nationally. In Manitoba, researchers estimated the province had five-and-a-half times the number of reported cases between 2009 and 2018. And as climate change continues to fuel the spread of ticks beyond rural areas into urban spaces across the country, infections are expected to skyrocket.

Moreover, because Lyme disease is relatively new to Canadians, and its symptoms mimic those of other illnesses, it is very difficult for doctors to diagnose, as reported in a paper by Dr. Robert Schoen. Often, they detect it too late, leaving some patients with debilitating chronic symptoms, unable to work and their quality of life reduced. In rare cases, it can even lead to death.

“There are so many questions that need clearer evidence … and there are great needs for more and better research,” McLaughlin says.

He says a biobank dedicated to Lyme disease would have to “grow to a large enough size so there are enough participants, and enough high-quality data to be informative and to answer important scientific questions.”

That, he says, would require a wide variety of samples — tissue, blood, urine, etc. — and information about the patients and their environments, when and where they had a tick bite, what kind of disease-carrying ticks they came in contact with, as well as at what point in the infection they were diagnosed.

The element of time is a ‘game- changer’ 

A biobank would need data collected over years, and ultimately decades, so researchers can track the infection, how it progresses, how it spreads in the body over time and what its long-term effects are, on not only individual patients, but wider populations.

“Building that element of time into biobank design is a game-changer,” he says.

“To have a biobank that is sustained over time and allows science to examine time-related effects is crucial” to finding the answers researchers need, he adds.

”The ticks are changing, the person is changing, their environment is changing and we know if you were to detect a biological effect, it will depend on when that blood sample or that urine sample … was taken.”

Such a dataset could eventually lead to the discovery of new ways of detecting Lyme disease and the bacteria that cause it so clinicians can diagnose it earlier, and apply more effective treatments and preventive strategies, as well as new ways to control chronic symptoms in those suffering from long Lyme, he says.

But such a long-term project requires sustained investment, top-notch expertise and state-of-the-art technology to continue growing over the long period of time needed to gather enough data to generate results, McLaughlin warns.

“It needs broad engagement and teams that can then attract funding. Once success has been demonstrated, more researchers, teams and funding will be attracted,” he says. 

The president of CanLyme, Dr. Janet Sperling, says the foundation is working to establish a biobank that does all the things McLaughlin describes.

“CanLyme has long advocated for a biobank to provide hard data for the seemingly intractable controversies surrounding Lyme disease,” Sperling says. 

“We know that scientists have the necessary tools, and that patients and their families are willing to provide the data and tissue samples. Our goal is to be part of a movement that makes this happen and drives important and breakthrough research.”

Ethics an essential part of biobanking

Another important aspect of an effective biobank is a code of ethics that protects patients’ data and ensures their information doesn’t fall into the wrong hands.

“Fully informed consent is essential in biobanking,” McLaughlin says, when it comes to getting patients to donate their samples as well as their personal information and data. 

“Consent relates to being clear about the purpose, why are we doing something, how the information or biospecimens will be used, and who will have authority to use that information,” he adds. 

McLaughlin says ethics is one of the foundational pillars that CanPath is based on. Ethics has many dimensions, which for biobanking includes:

• Doing no harm.
• Letting participants know potential risks and benefits. 
• Protecting privacy and ensuring confidentiality.
• Making sure patients are not coerced into donating their samples and information.
• Informing them who will use the material and who will benefit from any discoveries derived from their data. 
• Equity, diversity and scientific merit in research that uses the biobank.
• Accessibility of research to all communities. 
• Transparency about research and its results.

McLaughlin says ethical codes concerning biomedical research have evolved for the better part of a century and they have adapted over the last couple of decades as the practice of biobanking has gained traction.

“Now, we have much clearer and stronger ethical guidelines … that all researchers in Canadian universities and accredited health research institutions must comply with,” he says.

”These Canadian standards for ethical conduct apply in all parts of the country and ensure that biobanks and their use in health research comply with ethical best practices.”