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Q&A: Bogi Eliasen on How the Faroes Could be a Model for Integrating NGS Data into Health Records


bogi.jpgName: Bogi Eliasen
Title: Program director for FarGen, Faroe Islands Ministry of Health
Experience: CEO at consulting firm Implementer
Special advisor to the Faroe Islands Ministry of Foreign Affairs;
Advisor to the Faroe Islands Ministry of Trade and Industry
Education: MS in political science and masters of international law from Aarhus University, Denmark

Bogi Eliasen
is heading up an ambitious project: to sequence all 50,000 citizens of the Faroe Islands, a self-governing territory within the Kingdom of Denmark.

Eliasen, a program director at the Faroe Islands Ministry of Health, announced the project, dubbed FarGen, at last month's Personal Genomes meeting at Cold Spring Harbor Laboratory. The effort is kicking off with a 100-person pilot project to address the scientific, technical, social, legal, and ethical questions raised by the project (CSN 10/5/2011).

Eliasen, who actually has a background in political science, not genomics, recently spoke to Clinical Sequencing News about the project and his thoughts on how it could inform a widespread implementation of whole-genome sequencing data into the clinic and healthcare systems beyond the Faroe Islands.

As a political scientist, how did you become involved in a genomics project?

My wife is a geneticist. She's from Peru. She opened my eyes to these possibilities. When I began to dig into it, what really came to me was the really high level on the genetics/genomics part, but a lack on the societal side, on the implementation side, on making the society understand this. So that's why I got really interested in it, because that's my field — how to make it usable, because making it usable is not just putting a machine into a hospital.

How did the idea for FarGen come about?

Ever since the discovery of the double helix this has been one of the visions of all scientists in this field. So it's not like it's an original Faroese idea to go for the whole nation.

But, because of the small size, the founder population, the isolation, and the inbredness, we have some high frequencies of some [genetic] diseases.

Then there was the approach from DeCode Genetics in the late 1990s … [DeCode wanted] to have the Faroese as a check population to their own projects ... but the Faroese political system backed out of the process. The Faroese population at that time was probably not ready for a process like that … but it provoked the Faroese to consider the use of genomics or genetics in healthcare as a whole.

At the start, it caused a very fierce debate. Then, in 2005 the Faroese genetic biobank [was established] with a legal framework.

From 2007, we had the start of [genomic] research projects being based in the Faroes, inside the Faroese framework. So, slowly developing from there, I with some other people, started to look at what is the true potential of this.

By going virtually around the world and speaking with high-level scientists, we came to an understanding that firstly, we do need to have genetics and genomics integrated into the Faroese health system in order to have as good a healthcare system as possible. Secondly, it was quite obvious after we looked into it, that this is the best place to take genomics to the next phase, to implement it into the clinics and be attached to healthcare records and knowledge.

What questions will the pilot address?

The pilot will address firstly the construction of the system — how can you integrate genomic data into the healthcare system? — and secondly how [to] make it usable. Does it work the way we are [anticipating]?

And then, of course, we are trying to optimize the knowledge from this pilot project by selecting very carefully the 100 individuals, so we'll also gain health information and information for public health. We still want to gain health information from the pilot so it's not just a pilot for a pilot's sake.

That's the process we're going through now, is how do we get the information that we want out of the pilot? I can't really specify more now.

What is the timeframe of the pilot?

We have a goal of doing the pilot in one year, but the time frame is one to two years, because we know that working with approaches like this you will run into some things that might require some more time.

What have been some of the major challenges, and what do you see as challenges going forward?

Winston Churchill once said when he was asked about the war: 'This is not the end. This is not even the beginning of the end, but it might be the end of the beginning.'

And I don't think we're even that far yet.

There are a lot of obstacles. There are a lot of challenges and we need to be able to have a process where we give something back to our own people, who you could say are the owners of this project with their blood. And we need to have it organized in such a way that we are attractive for international research, in order to get knowledge running.

We have worked a lot on trying to [develop] a structure that could bear a system like this. The real broad genomics work is just getting started now.

With the limited size of our population, we do not have the manpower for all the tasks, and I don't think any country would have the manpower for these tasks that are required.

So, that's one part of it. The other part is to keep on focusing on the real end user of this, the individual.

Once the system is up and running, how will it work?

We have to run several parallel processes. One is the direct genomic information. The idea is that we have the sequencing done and we store it at our genetic biobank and it will be linked to the health records of the citizens.

In the pilot, we are not going to give any information back to the participants, but as the system is meant to work, if an individual goes to the hospital, talks to a doctor, and [the doctor sees] some symptoms [that indicate that] having genetic information would be helpful, the doctor approaches the biobank for the request, explains why and then the biobank has to decide yes or no on the request, if it's sufficient to run the test.

But, because [the sequenced data] is already in the system, the test is just a computer run. If there is something in there that [is actionable], we will have a genetic team that will follow up with counseling.

Like every hospital system today, you have to prioritize what you do. We cannot go out and give answers to every request and questions that probably will come. But I don't know if that's so different from when you take a blood test. When you take a blood test, you just do a test on some specific things. You would normally not do a test on everything that's possible in the world today.

In the future, a focus on this [will be] how do we develop possibilities to be preventive? But that's not a question for the pilot. That will be integrated when there is secure enough information that it can be used. So that's going to be a dynamic process going on forever.

[Another question that will be addressed] is for future use, … will it be repeatedly analyzing the same data or sequencing with several years of intervals?

What are your expectations in terms of how many people will opt to have their genomes sequenced, and what percentage of the population would need to enroll for the project to be considered a success?

We have set our criteria on more or less half the population — 25,000 — as being a success and a sufficient number to work with [the data]. I think that very soon the advantages of having [one's whole genome sequenced] will be so clear that most will do it. There will of course always be someone who doesn't want to.

It's very clear in our project that this is something that's voluntary. You can opt in or opt out. Once we are running you have the right to get this, you have the right to have your genomic information attached to your health file.

The idea is that a person's genomic information will be stored with their health file, and can only be accessed when a physician puts in a specific request for a specific test. But, as I understand it, each individual also has the right to his health information. Is there concern that people will simply retrieve their own genomic information and then have it interpreted elsewhere?

This is not something we have considered a lot in this project because that's the way the law is. We can't do it differently. In our law on health information, the health data is the property of the individual, so if you want a copy of health files, you have the right to have the copy.

The people who would get their health files out of this system, or get their raw data on their genome out of this system, they would do it somewhere else anyway if they wanted to. I do strongly think that somebody who is going somewhere else to have an opinion or interpretation on their genome would do it anyway.

What we are offering is actually empowering the people to understand what it means.

At the Personal Genomes meeting, you said that you thought the FarGen project could serve as a model for other countries looking to implement genomic information into the clinic and into the healthcare system. Can you elaborate on that?

I see it as a model because it's not just about the genomics. This is about the whole holistic model. [For example], we are working with the Ministry of Education and the public publisher of school material — this country is so small you can actually not gain money on school books, which is very good in this case because there is just one publisher we have to talk to.

We are starting a process where we would have genetics and genomics put into all school curriculums from first grade through high school. That will include having genetics and genomics in all relevant courses — biology, mathematics, history, physics, chemistry, maybe even religion.

So we're working out now how we're going to do it. This is a very important part in making the society aware of the possibilities, and also of the risk of genetics. And I think this is empowering the society and is a very crucial part in making it usable. You need to have the users, the average citizen, understand what this is in order to optimize the possibilities.

The [genomic data] will also be integrated into all the different parts of the healthcare and social system. We can do that, not easily, but it's doable in a small country like this. And all the information is probably a bit easier to handle. And so is merging the data because it's only one healthcare system.

You also mentioned that the Faroes were particularly well-suited for a project like this because there are fewer socioeconomic disparities. Why is that important?

Our project is focusing a lot on the democratic side of this opportunity. It's the right for anyone to opt in or opt out. Our [healthcare] system is equal access today, so it's just building on the structure that we have, but [access to healthcare] is a major problem in bigger countries.

It's discussed as in issue in genomics that … only a certain part of societies or countries [would] get this knowledge. So we can actually offer here a system where we don't have this problem. I believe this is one of the strengths of doing FarGen in the Faroes, because there are some things that are problems in other societies that we don't have.

What has been the public's response to the project? Are they receptive?

We know it's well supported by the political system. And because there has been a lot of attention on genetic disease in the Faroes … people are aware of the importance of genetic information, or family history.

In a small society, people follow families and see traits of families, so in a way, this might be to put more science into what is a part of the culture. Of course, you don't have this full information on the genomics, but still you know that there are differences between families and some diseases run in certain families.

Also, there has been a bit of a push from several patients' groups to have more focus on genetic tests or genetic information. In a small society like this, and when you also have some high frequencies [of genetic disease] because of the inbredness, everybody knows somebody who has some genetic problem. I wouldn't say defect, but everybody has some genetics that are not perfect. So I think people are more aware, and I think in general there is a high trust in the healthcare system and a high trust in the society.

This is a society that has the lowest crime rate in the world, which probably explains the trust. Since we began working on the project and also since it got a lot of attention because of the Cold Spring Harbor conference and the articles in the media, there actually has not been any negative feedback, not at all. If there was popular negativity on this project, it would have been obvious now.

Is there anything else you'd like to add?

Just that it's important to remember that this is very much focused on our Faroese citizens more than just a genomic project. And I guess that's what makes it interesting.

Have topics you'd like to see covered by Clinical Sequencing News? Contact the editor at mheger [at] genomeweb [.] com.

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