S3-Episode 4: Ethical Uses of Genetic Data: A Conversation with Dr. Bartha Knoppers

Patricia Kosseim:

Hello, I’m Patricia Kosseim, Ontario’s Information and Privacy Commissioner, and you’re listening to Info Matters, a podcast about people privacy and access to information. We dive into conversations with people from all walks of life and hear real stories about the access and privacy issues that matter most to them.

Hello listeners, and welcome to another episode of Info Matters. We have a very special guest today, someone I’ve had the privilege of knowing since my days as a student at McGill, Dr. Bartha Maria Knoppers is a world renowned expert and pioneer in the field of health, law, and bioethics, with particular focus on genomics. Her groundbreaking work has fundamentally changed our understanding of the complex intersection between science, law, technology, and ethics. She currently serves as the director of the Center for Genomics and Policy at McGill University, collaborating with international organizations, governments, and policy makers to help shape ethical guidelines that safeguard human rights while supporting the health and wellbeing of individuals and communities. So in this episode, we’ll be exploring some legal and ethical considerations surrounding genetic research for the public good, as well as appropriate governance frameworks for responsible data sharing. So fasten your seat belts as we embark on a journey of discovery, ethics, and the ever-evolving frontiers of science. Bartha, welcome to the show.

Dr. Bartha Knoppers:

Nice to be here.

PK:

So Bartha, can you tell us a little bit more about yourself and your work? You’re a globally renowned health lawyer and bioethicist in specialized and very complex areas of reproductive technologies and genomics. But in very simple terms, how do you explain to people what it is that you do?

BK:

I think the best or easiest way to explain is how I’ve learned to survive the scrutiny of customs or border agents when I land somewhere. When I do international work, comparative work, I travel a lot, as you know, to find out what other countries are doing on particular subjects. So when you get to the border, the passport person, and they say, “What do you do?” And you say something like law and biotechnology, they look at you, it’s not enough because they’re wondering, “What are you talking about?” So I’ll give you a few examples. In 1978, I would’ve said, I’m working on the case of Louise Brown, the test tube baby. Ah, the test tube baby. Then in 1997, I would’ve said, I’m working on Gattaca, and I thought, oh yeah, have you that movie? It’s really something. “Is it true? Is that really happening? Are we all going to be selected out and in and so on?”

Then in 2006, my favorite would’ve been Dolly. All I had to say was “Dolly.” “Oh, the sheep? Oh yes, is it science fiction, are we all going to be cloned?” And my last example would probably be in 2018, let’s say gene-edited Chinese twins. And you would be surprised just taking these examples that people read about or hear about, they know what’s going on. They might not read Nature or Science, but people understand the issues surrounding these scientific discoveries that sometimes scare them, usually excite them, but everyone wants to talk about it.

PK:

Those are amazing examples. Thank you so much. Some laws have treated genetic information as being more sensitive than other personal information and sometimes hold it to higher standards of protection. Sometimes people refer to this as genetic exceptionalism. What’s your view on whether genetic data is more sensitive than other types of personal information and do you think it should be governed differently?

BK:

If you go back about 50 years, there was a lot of stigmatization even around cancer, and I guess you could say the same about infertility. It’s only recently that people talk about infertility, that it exists, 15% of the population, and yet it’s hidden. No one talks about it. There’s no doubt that genetic information is special because it’s familial in nature. So it’s not just you, it’s you, your brothers, sisters, your parents, your grandparents, and your future or actual children. But other than that, a lot of reproductive information is sensitive. Sexually transmitted diseases, that’s sensitive. Infectious diseases, sensitive. I mean COVID now has become normalized. It has become, oh, it’s like a new kind of flu, but when it first came, people would cross the street not to come close to someone. So having COVID or somehow again, was different and awful and you didn’t do something right.

So my hope is that as genetics enters the clinic from research to what we call genomic medicine, you go in, you get a blood test, you can get weighed and measured and you have a CT scan and you have a genetic test that it becomes part of a list of integrated, normalized medicine where you need it. So it’s going to take time to normalize, to integrate, to be accepted as part of the human condition, just like being shorter, fatter or taller or whatever else.

PK:

You talked about genomics moving from research into the clinic. So let’s talk about an example of how genetic information is routinely used in the health context. Newborn screening programs, for instance, typically involve pricking the heel of a newborn baby to collect a blood sample that can be tested for a range of rare health disorders and diseases to ensure early detection and treatment. So why are such programs so important from a public health perspective?

BK:

Well, this is my favorite topic. Why? Because it’s how I got into genetics in the first place. I was happy working on all the reproductive technology stuff and I got a phone call from Dr. Charles Griever saying, “Professor Knoppers,” he said, “We need you to go to a newborn screening program.” It’s 1985, a meeting in the United States. I go, “What is newborn screening?” I had babies but couldn’t remember any of that stuff, even happening to my own children, which it did, by the way. Newborn screening is looking in a population without any limitations in terms of whom every child that’s born who’s presumed to be asymptomatic. I mean, obviously if a child has something then they’ll find out right away and put him in the neonatal intensive care, whatever, but every child presumed to be asymptomatic to see if they are at risk for a treatable condition. Only then, when you get that presumed at-risk child, will you do an actual diagnostic test.

So in a way, part of the child’s right to health, which is where I situate it now, the at-risk child’s right to be found. So I’m really in favor of newborn screening programs and the number of diseases screened for, I didn’t say tested for, but screened for varies even within Canada, for instance, from four to 33 and around the world, depending whether the countries can pay for the treatment. Remember it has to be actionable or clinically actionable as we say, and depending on whether they can afford the treatment, the number of conditions will vary. Different countries can afford different kinds of tests and labs and follow up and treatment. But in a way, it allows every newborn to be registered to exist. So it has a universality well beyond sort of the medical public health context. So I’m a big proponent fan. In fact, I think it’s the right of the at-risk child to be found. That’s what I think newborn screening is.

PK:

You said that these have been around for quite some time. How have they evolved over the years? Are there more conditions that are screened for, have the tests changed over the years? What have you seen?

BK:

There are definitely more conditions being screened for, but there’s also new technologies available, and the latest one is whole genome sequencing, which the costs are coming down. It’ll come to a point where you can do a whole genome sequence on every newborn and then you think, “Oh my goodness, is this what we want to do? I sort of have a futuristic report card before the kid is even one year old or whatever.” So some countries and in Canada, everywhere around the world, are beginning to look at how can we use this new very accurate technology in a responsible way. And so they’re beginning to, in the discussions, advice and so on. No country has done it yet. It’s in a research stage. Take panels of conditions, let’s say 300 of the most severe conditions that we know in a given population they may be at risk for.

So even if you do hold genome sequencing, you can still limit the number of conditions to treatable, actionable, and so on. Then the issue is what about if it’s not actionable at birth but will start to appear when you’re 35 or 40 or whatever, should we test babies for that? Because then maybe it’ll be of interest or even breast cancer, it’ll be of interest to other family members, and that’s where things really get kind of gray and no one has come to a conclusion yet. The Europeans are more conservative, they want it limited to actionable during childhood. And anything after age 18, you can go get yourself tested. Whereas the Americans largely emphasize the parental prerogative to include their child in such testing in newborn if they get everything that they want to get. So it’s more of a private transactional model, whereas most newborn screenings are public health populational. So I’m very excited about the promise of whole genome sequencing, but we need a lot more debate and discussion if we’re going to do this in Canada.

PK:

You mentioned parents and how does parental consent fit into all of this?

BK:

I am of the opinion that it is the at-risk child’s right to be found. It’s the child’s health and their right to the highest attainable standard of health that comes from the convention on the rights of the child. The child, their rights. Hence, I think you need to notify parents during a prenatal. You need to discuss that this will happen. You need to say what it’s being screened for and if the child is at risk, then will be tested and confirmed, parental consent at that stage, at the testing of the possible storage for validation, consent for research, all of that. Yes, they should be told, they should be discussed, but I really don’t think they should ever say no to newborn screening.

PK:

You mentioned the child’s right to know and to have these tests screened for, what about a child’s right not to know when they come of age? Is there any considerations or ethics guidelines that anticipate a child perhaps not wanting to know the risks that they may develop a certain condition in their thirties that’s non-actionable for instance?

BK:

That’s a really good question because that is why currently, in the discussions on newborn screening, the screening would be for conditions that express themselves during childhood. And so they would certainly know. If they’re taking pills or getting treated or having surgery or whatever they all have to do or special diets, they would certainly know what they have. Anything beyond actionable during childhood, I think really is the choice of someone at the age of a majority to ask if they want to know. I don’t think that should just be handed out to willy-nilly at birth.

PK:

You talked about parental consent with respect to other uses, for instance, for research or for other purposes, and I think despite their benefits, some newborn screening programs have been the subject of controversy in some jurisdictions, particularly on issues of privacy when those samples are used for other purposes. Can you explain what went so wrong in some of those cases?

BK:

The blood spots currently are kept on Guthrie cards, which is a form of porous paper, and they have the blood spots on them, and those are needed for validation because screening has a very high, what we call, false positive rate, which means it’s screening. If you’re going across thousands and 70,000, let’s say newborns in Quebec in one year, you would have to have a spot to validate. Suppose something comes up from the screening lab and says, we think this newborn has, may have, you’d have to check the spot and then you would go find the child. So there’s always a few spots left and they’re stored for a number of years. Some countries keep them forever, but most can’t afford it and don’t want to have the responsibility and will destroy them. But if you’re going to store longer or you want to use it for research, I think that’s where consent comes in.

I definitely think consent comes in at that level, and certainly for research. Even if you were to anonymize them, I think you would at a minimum have to notify the parents that the spots will be stored for so many years and then they will be anonymized and aggregate data, “Out of 70,000, 3000 had X,” but you wouldn’t know. You couldn’t find them. Once you did that research, you could never go back. That kind of research is public health research, which I think is in the public interest and in the interest of ministries of health to know what to do or not to do in a given state. But other than anonymized aggregate, I think you definitely need a fully informed consent. But you need to tell people, you need to inform them.

PK:

And if you don’t, that’s, I imagine, where things went wrong off the rails.

BK:

Yes.

PK:

And in some jurisdictions, unfortunately, all of these samples had to be destroyed because they weren’t transparent and didn’t get the consent upfront as you say. I wanted to switch to research biobanks for a moment. Now you’ve devoted a large part of your life’s work to the governance of research biobanks, and in particular, on issues related to consent. So just to level set, biobanks of course collect blood samples, but also other related health information from thousands, sometimes even millions of people for research purposes. Why are biobanks so important and why do researchers strive so hard to collect as many blood samples or collect as much personal health information as possible within a biobank?

BK:

So biobanks are systemically organized and analyzed across either a disease area or across a given population or smaller population. So they serve as resources. They can even serve as controls like you want to know in a population, you have a urine sample, you have a blood sample, you have socioeconomic data, you have demographic data, over time, longitudinal, what happens to these individuals? So they serve a public validation service in terms of knowing what’s happening in a given population over time.

So to understand developmental stages, we also need pediatric biobanks. We need to know how many after age 45 had early onset dementia in a given population. Is it because of food? Is it environment? Is it the industry next to them that was spewing out pollution? We can’t organize ourselves as a state for universal healthcare systems to put our money where it’s needed, nor can we organize our research if we don’t have biobanks against which we can do our clinical research that involves individuals, communities, or families. So it’s a way for people to contribute, not as patients or persons, but more as citizens to what constitutes a resource for others over time.

PK:

So why is it a problem when some people don’t want to be in a biobank or don’t want to give their consent to have their samples or other personal data included?

BK:

Well, that’s their right, and for whatever reason, they may decline. The problem is that often, the refusal of individuals is because there’s a mistrust in the medical establishment. But the problem with not participating is that your given community, your given familial socioeconomic circumstances and so on, and your own origins, and where you came from, your grandparents came from, are not recorded. And so these data sets are not representative of modern, what we call, heterogeneous as opposed to homogeneous populations. And so then people say, “There’s not enough diversity in your data sets.” Well, yeah, we need more people that are not a Caucasian of European origin. Canada today, ScanSTAT 2022, 24% of Canadians living in Canada today are from non-European or Caucasian origins. We need data on these people. You can’t get the right drugs, the right devices, the right treatment, the right understanding if they’re not in the data sets or if they’re not in the biobanks. So there needs to be, I think, more genomic literacy, if I can call that that or health literacy because everyone benefits from these resources.

PK:

You talked about public trust. What are some conditions that would enhance public trust when it comes to participation in research biobanks?

BK:

I would start with transparency. What is so difficult about once every three months, doing a bulletin, a publicly available, understandable, plain English, French, whatever 14 languages you want to put it out on, what’s the news, where are we going, why? And then three months later, what’s the latest news? Where are we going, or still going or not going, why? We don’t have transparency. We don’t have sufficient visible governance and we don’t have visible accountability for where mistakes are made. So I think once we have that and people know where to go look for stuff, why do we go into Google? Why aren’t we going to the Ministry of Health’s quarterly bulletin to see what’s happening? That kind of thing. I think those are the three elements, visible governance, transparency, and then accountability.

PK:

Let me just ask you if you would add also the opportunity to opt out. So if people are asked for their consent, I suppose it gives them great comfort to know that if they change their mind, they can withdraw their consent at some point and even if they don’t ever do so, just knowing that they have the control and the ability to change their mind, I think, is another important factor. Would you agree?

BK:

At any time. That is a fundamental human right. It’s actually in the general data protection regulation in Europe, the right to withdraw, and it’s certainly part of research ethics. My goodness. And it’s certainly part of health ethics. If I don’t want to go to the physician or I receive my breast screening envelope and I just toss it, that’s a choice. Of course you have those choices. Yes, absolutely. I wonder why people think that they can’t withdraw at any time. It’s fundamental.

PK:

In your writing, you’ve tried to sensitize people to this value of solidarity as a core guiding concept in the governance of health research. Can you unpack for us what do you mean by solidarity?

BK:

Being a child of the sixties, solidarity sort of resonates with protests and causes, and it’s not really meant to be that, nor is it the opposite of individualism. In this context, in this healthcare research, public health context, I see it more as acting as a citizen, not just as an individual. We do live in society. We’re not in a cave, and as a result, we have to act in the social contract, as we call it, in a way that’s for mutual benefit. And for me, participation, should you want to, in research, or giving up some of your data, don’t have to give away your medical record, but giving up some essential data that’s needed for healthcare systems to be more effective and more efficient and more targeted, to me, that is acting as a citizen in solidarity with other citizens. And we’re all presumed healthy, but we’re also all presumed to be at risk and you can’t differentiate or plan if you don’t participate to some extent as a citizen.

PK:

So do you see a difference in the concept of solidarity when it comes to academic or scholarly research on the one hand and commercial research or for-profit research on the other?

BK:

Well, one kind of research can’t work even without the other. We don’t have the deep pockets of industry to develop the treatment. The drugs takes about 10 years or the devices takes about 10 years, takes a lot of investment, a lot of clinical trials because it has to be safe. Certainly universities and individuals cannot, in the research community, carry that weight. So we need industry, we need the commercial sector. And industry bashing is just too easy. I find that industry can, if asked and appreciated, act as corporate social citizens or with social responsibility, and they very much want to be part of acting responsibly and to be seen as acting responsibly, and to be seen as understanding public criticisms or public skepticism. At the same time, by law, they have to meet their obligations under law to their shareholders and so on. So profit is part of their existence.

So it’s a delicate balance. And yet if you ask them, they want ethics frameworks. They want to know how to be part of data sharing without being seen as data hogging or data stealing. And I work on the presumption of good faith. I presume everyone is morally responsible, and I go from there. If I start working on the international coordination, collaboration, elaboration of frameworks and principles and treaties and so on, and I don’t have that presumption of good faith of social responsibility, then you’re just a cynic. You might as well just get out of the whole business.

PK:

So for decades, you’ve worked tirelessly through an international organization you founded called P3G, Public Population Project in Genomics and Society. Your mission has always been to promote the harmonization of technical standards, policy frameworks and tools for biobanks around the world to facilitate international data sharing across jurisdictions. Do you think that harmonization is feasible today, either through laws or in practice? What do you think?

BK:

P3G existed for 13 years. The goal was to make sure that the biobanks, to the extent possible, that were emerging could crosstalk, and not that they were all the same, but that there was interoperability and harmonization in what they call the variables that they were collecting in these longitudinal resource biobanks. Why? Because if you have at least 65% harmonization in the variables you’re looking for, then you can achieve statistical significance in half the time.

So suppose you needed a cohort of 10,000 women with breast cancer and you went to the UK Biobank, which is the biggest one as you know, half a million. They wouldn’t have, breast cancer women between let’s say 45 and 50, they wouldn’t have 10,000. But if you could put together with Japan and Estonia and Quebec for example, then you could get your cohort of 10,000 probably in a month and be able to start your research. So it’s statistical significance, it’s interoperability, it’s sharing data from people who come from different countries. So the whole idea was for those resources to kickstart if you like, and that was the purpose of P3G to kickstart, harmonize epidemiological data, but also under common ethical principles.

PK:

And I suppose that work was all the more important when studying, say, rare diseases in order to, as you say, achieve the necessary size of cohorts to get statistical significance in these rare conditions.

BK:

Rare is not so rare, just by chance was reading about how they are uncommon, but impact millions, the rare disease paradox. 30 million people affected by rare diseases live in Europe alone. How do we find these people and how do we find enough of them to be able to do something because we’ll understand how they live, what they have. I think the rare disease community has been absolutely fantastic in participating in building biobanks and international data sharing and so on.

PK:

You said that P3G existed for a certain number of years, but your work in this international space has evolved in other form, for instance, the Global Alliance for Genomics and Health, and so you continue that harmonization effort through this broader global alliance.

BK:

Yes, the Global Alliance is my adolescent. Let’s just say P3G was the baby. In 2003, the final map of the genome came out in nature. So we have a map, we know where the genes are, but we don’t know what they mean. And we don’t know if you change, you’re living in a country and 50 years, 60 years later, you’re now an American citizen or you’re Brazilian or you’re South African or whatever. Between where you were and where you are now, have things changed in terms of your phenotype? How you express your genotype is through your phenotype, which is environmentally and socioeconomically and otherwise influenced. So GA4GH said, “We really don’t know which conditions map onto these now that we know where the genes are.” And the goal then was to start with a framework which we wrote based on a human rights framework.

If you go to human rights, these are universal rights. They belong to everyone and hidden away in the Universal Declaration of Human Rights of 1948 and then later put into an international covenant signed and ratified by 171 countries, all those human rights become actionable, legally actionable. You can say to your country, to your ministry, “What have you done about my human rights?” Because Canada signed and ratified. And the rights we concentrated on were three rights, but mainly the right to benefit. Everyone has the right to benefit from scientific advances. And we said, if everyone has the right to benefit, then that is what GA4GH’s Global Alliance mission will be, to activate that right. And activate it by bringing together on many organizations and so on, how to do it with policies and tools and standards.

PK:

Fascinating, very inspiring, Bartha. Let me bring you back to Canada for a moment. You’ve recently served as a member of an expert advisory group providing advice to governments across Canada on a Pan-Canadian health data strategy. Can you tell us a little bit about what that work involve and what did the expert advisory group find were some of the shortfalls in how health data is collected, shared, and used in Canada today?

BK:

Here on that Pan-Canadian health data strategy, we find that when you bring science and you want to bring it into the clinic. Clinicians don’t necessarily have the ethos of data sharing. They’ve been brought up Hippocratic Oath, patient confidentiality, patient privacy, and they do believe in it and it’s a good value as well. But when you can’t even send your file to the hospital across the city and you certainly can’t open the file to researchers, even when they have ethics committee approval and they’re not at all in the mindset that health data needs to be shared so we can understand what we need to do, where we need to go. The silos are still there. They get legal opinions before they will send out something because they’re so scared, even when we have patient consent, even when the patient understands that not only their data can help themselves if they get a research done on it, but it can also help the next patient with the same condition.

And who knows 10 years from now, that condition may be treated, cured or whatever. So we have the silos problem, we have the custodian problem, and we have the lack of what I call public health literacy, genomic literacy, people understanding that this matters for everyone. And so it’s more difficult than we thought it would be trying to get hospitals to share it within a province, across provinces. I’ll give you an example. During COVID looking at the samples from deceased individuals who died of COVID, we had a project to see if there was what we call comorbidity and comortality, would these people be more susceptible, and how come others didn’t get it? Why were they so resistant?

And yet with deceased persons, everybody was running around saying, “Well, you got to get next of kin,” but nobody was allowed in the hospitals, right? You can’t go sit down and have a nice chat, and if you call them up at home, you’re going to be accused of invasion of privacy and upsetting the family. So we had a lot of difficulty understanding that data from deceased persons in the public interest for the public good to be used to understand COVID. I mean, I honestly think that sometimes in a public health pandemic that the traditional safeguards we put in place have to be understood as being proportionate and not extreme in their application.

PK:

The expert advisory group emphasized this need for a people-centric health data system. Can you tell us a little bit about what that means, a people-centric health data system?

BK:

Yeah. It’s in the first line of the Health Data Charter. It actually says, “Person-centric health information is designed to ensure that health data follows the individual for clinical and analytical access and use.” So it follows you. And one day, I guess, the dream is that everyone could just go in to their record and share it with whoever they want. And we’re not there yet. But people-centric means the person comes first and then after that, you can contribute to the system. I think for that though, we really need to work on health data literacy, understanding that health data is not only about you.

PK:

You mentioned the Canadian Health Data Charter that the expert advisory group recommended. Can you tell us a little bit about what else is in that charter? What are the other values and principles that you put forward?

BK:

This is a very short, understandable, shareable health data charter. The charter was meant to frame in a very short way the following values. It’s to put persons and populations at the core of all decisions about disclosure, access and use of health data. So it should follow the individual, as I said, have common terminology, common ways of entering with understandable codes, quality, security, accessibility, and the use of health data for policies, programs, services, statistics, and research for the public good given the importance of open science. It also talks about innovation, health data literacy, harmonization and support for First Nations, Inuit and Metis Nation data sovereignty. But the important thing is a tiny little phrase at the bottom, “The Health Data Charter is inspired by and founded on human rights whose universal nature transcends jurisdictional and disciplinary differences.” That’s why it doesn’t say Canadian Health Charter, it says health charter, recognizing international standards and data governance norms.

PK:

I’d be remiss if I didn’t point out that I think you do mention the importance of respecting privacy and ensuring security safeguards to data as part of the values in your charter.

BK:

Absolutely. I stand corrected. So the charter requires that the quality, security and privacy of health data to maximize benefit and reduce harm to individuals and populations. Thank you for pointing that out.

PK:

You know I can talk to you for hours Bartha, but I know our time is running out and I don’t want to let you go without one last question. You know that one of my office’s strategic priorities is trust in digital health, and our goal there is to promote confidence in the digital healthcare system, but also to support the pioneering use of personal health information for research and analytics to the extent it serves the public good. So let me ask you, what would be your advice for my office on how we can advance this goal, both in terms of enhancing trust in the digital healthcare system, but also in supporting pioneering use of personal health information for research in the public good?

BK:

We need tools, let’s say, at about grade eight levels. So you can use it in your church group, you can use it in your schools, you can use it in discussion groups, I can use it when I’m teaching master students. And we need to know what’s happening, what are you doing? And you can do it via scenarios that people can connect to because too much abstract stuff just sounds like marketing language or government gobbledygook. You want short pithy, interesting scenarios that are real. And if people understand that their data can be used for research or for quality and privacy protections in hospitals, but it’s a learning system. So if they do participate in research or they give access to their outcomes and their medical record, a basic set, then the next patient outcome and the knowledge from the research will come back into the healthcare system for them or someone else.

I just think we need to have more interesting, short, understandable tools available to the public. As I mentioned at the beginning of this interview, if every four months something came out that you could check on and people doing homework, people doing research for their essays, and the university people wanting to have a good subject to discuss in their community group would go to these sites and say, look at these scenarios, let’s talk about it. There are no right answers or talking values as expressed. What does privacy mean to you? Privacy to me? What does data sharing mean really? So we just need to talk more but have more informed talk that’s contextual and proportionate to reality.

PK:

That’s great advice. And back to where we started, I did say we’d be embarking on a journey of discovery, and that’s exactly what we did. So I want to say thank you Bartha for taking time from your very busy schedule to join me on the show.

BK:

My pleasure.

PK:

We’d like to dedicate this special episode to a mutual friend of ours who is no longer with us. Susan Zimmerman, the executive director of the Secretariat on Responsible Conduct of Research, was a real trailblazer in health, law and policy. She dedicated the last two decades of her life to strengthening Canada’s national ethics standards for research involving humans through policy and practice. I know I speak for both Bartha and myself as well as many others in the community in recognizing her enormous contributions to the research ethics in this country. So this one’s for you, Sue.

For those who want to learn more about the topics discussed in this episode, there are links to resources in the show notes. You can also visit our website at ipc.on.ca to learn more about the work we’re doing to support trust and digital health. Or you can always call or email our office for assistance and general information about Ontario’s access and privacy laws. So that’s it folks. Thanks for tuning in to this episode of Info Matters. And until next time.

I’m Patricia Kosseim, Ontario’s Information and Privacy Commissioner, and this has been Info Matters. If you enjoy the podcast, leave us a rating or review. If there’s an access or privacy topic you’d like us to explore on a future episode, we’d love to hear from you. Send us a tweet @IPCinfoprivacy or email us at [email protected]. Thanks for listening and please join us again for more conversations about people, privacy and access to information. If it matters to you, it matters to me.