Frequently asked questions about the P5 Study

Who can participate in the study?

The study is aimed at all participants of the FinHealth 2017 study interested in their genome. While you do not have to understand genetics to participate, there is also no harm in having competence in genetics. If they like, the participants get to learn about many different aspects of genes and their significance to health and diseases over the course of the study.
National FinHealth Study

Unfortunately, only those who have taken part in the FinHealth 2017 study can participate in the P5.fi study. Anyone else interested can donate their samples to a biobank, as similar projects are planned for biobank participants in the coming years.

How do I participate?

An invitation letter has been sent to the participants of the FinHealth 2017 study. By submitting the consent form attached to the invitation letter, you register as a participant and we will contact you once your risk assessments have been completed. You will then get instructions on registering to the MyP5 page.   

Can I participate if I do not use e-mail?

Yes, you can participate even if you do not use e-mail. We will contact all participants once the risk assessments have been completed and providing an e-mail address will make this communication easier. THL will not disclose the e-mail addresses to third parties. We can also send the message by SMS. 

Can I participate if I do not want to fill out the consent form?

Unfortunately not, as giving consent is a precondition for participation.

I already have one of the aforementioned diseases, may I participate?

Having a cardiovascular disease, type 2 diabetes or deep vein thrombosis is no barrier to participation.

Where do you get my DNA?

People whose DNA samples have been collected in connection with the FinHealth study have been invited to the P5.fi study. The P5.fi study makes use of these samples.

Should I contact my doctor before this study?

You do not have to contact your doctor before participating in the study.

How will the study proceed?

We sent you the first questionnaire form with the invitation. Once we have received the form and your consent, we will record your contact information and start preparing the risk assessment. After the assessment has been completed, we will contact you and you can familiarise yourself with the assessment on the MyP5 website. Around three months after providing you with the assessment, we will request you to fill out a survey where we ask you to report how beneficial and understandable you found the risk assessment. A similar questionnaire will be repeated annually for a five-year period.

When will I get the results?

Laboratory analyses and statistical modelling on the genome are carried out for a large group of research subjects. At the same time, new methods for data processing are developed. This is a long-term study whose results will be given to the participants at the end of 2018 or during 2019 at the latest.

What kinds of questions will be asked from me?

The questionnaire includes questions such as:

  • Do you agree that the risk assessment you have received is a) interesting b) difficult to understand c) changed my view of my health condition?
  • Based on the information you were given in the risk assessment, have you sought examinations or treatment (with a physician, a public health nurse or a nurse)?
  • How do you find your personal risk for developing a cardiovascular disease?

Can the information I receive in this study also provide details about my family members’ risk for developing diseases? 

The P5.fi study explores risks for developing fairly common diseases of public health, such as cardiovascular diseases. These diseases have so-called complex origin, which means that, in addition to genes, the disease risk is affected by lifestyles, environmental conditions and also, to some degree, coincidence. The risk assessment also takes into account the individual blood values found in surveying the person’s metabolism. Although relatives have similar genes, the risk value cannot be directly applied to even the closest family members. If the examination would reveal a genetic finding which it would be highly important for your family members to know, we would provide information on this at your MyP5 page in connection with your personal risk assessment.

Should I tell my relatives about this study or ask them about it?

You can decide whether you participate in this study without consulting your relatives and you are also not required to share the results with them. However, it is often a good idea to be open with family and relatives. Telling your family about the study may also encourage others’ interest in improving their health-promoting lifestyles, which is only a good thing! Nevertheless, each family has its own style in handling such things and it is hard for an outsider to weigh in on these matters.

Can I receive information about rare diseases in this study?

The P5.fi study explores risks for developing fairly common diseases of public health, such as cardiovascular diseases. These diseases have so-called complex origin, which means that, in addition to genes, the disease risk is affected by lifestyles, environmental conditions and also, to some degree, coincidence. However, the large group of cardiovascular diseases also includes a few very rare diseases. Examples of such diseases may include disorders of the fat metabolism caused by the mutation of a single gene. Such a situation and the required measures, such as providing genetic counselling, is explained in a letter addressed to the participant’s physician, which you can find on your MyP5 pages in connection with your risk assessment.

Who will handle my data?

The study is led by the National Institute for Health and Welfare (THL). The academic partners of the study are the University of Helsinki and the Institute for Molecular Medicine Finland FIMM. All the researchers processing your personal data are always separately named and their names are included in the description of file of this study. The description is available online at thl.fi/P5 (in Finnish).

My genetic risk assessment indicates that I am at an elevated risk of developing one of the mentioned diseases. What should I do next?

The genetic risk assessment does not mean that you will actually develop the disease but that your disease risk is higher than average. That means that now is the right time to try and prevent or postpone the disease, for instance, by changing your lifestyle.  A letter to your physician (e.g. an occupational health physician, a health centre physician) is available in connection with your risk assessment. Book an appointment with your physician to consider together how you should regard the disease risk. 

Can I use this study to find out about my family history?

The P5.fi study is not concerned with the genetic variants used to determine family history.

Can I get the genetic data for myself?

The P5.fi study retrieves interpreted genetic data related to coronary heart disease, type 2 diabetes and deep vein thrombosis. The genome data of the research participants is entered into the THL Biobank during the study. If they wish, the research participants can submit inquiries to the Biobank for a possibility to obtain their other genetic data.
Contact information

Who will produce the genetic data?

The genetic data is produced from a DNA sample extracted in connection with the FinHealth 2017 study. The sample has been stored in the THL Biobank from where it is sent for analysis, e.g. genotyping, at the genotyping laboratory of the FinnGen research project.
FinnGen webpage 

My telephone number/e-mail address has changed, what should I do?

For the time being, you may inform our contact person of these changes by e-mail at [email protected].

Where will I receive further information?

You can receive further information about the P5.fi FinHealth study from the contact person of the study:

e-mail: [email protected]
tel. 029 524 7817 (Mon–Fri 12 p.m – 2 p.m.)

Markus Perola
MD, Research Professor, Principal investigator
National Institute for Health and Welfare
Email: [email protected]

For more about the diseases this study is concerned with, see the following sources: 

Can my sample or data be sold? Who owns the results of the study?

THL and the corporate partners of the P5 study do not have the permission to sell your samples or data. The results of the study will remain at THL’s disposal. 

Can the results be disclosed for the use of the police, an insurance company or my employer?

THL will not disclose your results to any third parties.

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