On this page you can find answers to the most commonly asked questions about the Genome Center and the use of genomic data.
All information regarding the future Genome Center is based on preliminary working group proposals and may change during the legislative process.
1. What does a genome mean?
A genome means an individual’s complete heritable genetic identity.
A unique genome containing all of the genes guides the construction of the body during the foetal period and the body’s functions throughout the person’s life. The genome determines our characteristics, from the colour of our eyes to the predisposition to coronary artery disease.
Each person has a different genome. Our individual differences determine our individual characteristics. Apart from the genome, the environment and lifestyle also have a major impact on an individual’s health.
2. Why are genomic data useful?
The use of genomic data has many benefits. The treatment of many diseases can be developed by utilising the individual’s genomic data.
This requires that individual factors are taken into account better than at present. In addition, some diseases can be prevented when a person’s individual risk of developing the disease is known in advance.
Genomic data provide new opportunities for the diagnosis and treatment of cancers. Using genomic data, it is possible to screen some of the people who have a high risk of cardiovascular disease or some cancers and take measures to prevent the disease.
The use of genomic data as support for drug selections makes it possible to customise drug therapy increasingly often so that the treatment chosen for patients is the optimal for them. The use of genomic data speeds up the development of drugs and may reduce development costs, which have risen very high. Money may also be saved when the effectiveness of treatments increases and drugs have fewer adverse effects.
Genomic data are used as an element of the patient’s treatment only when enough is known about the significance of the data and there is evidence of the efficacy and effectiveness of the treatments.
Practical examples of using genomic data
- diagnostics for lactose intolerance (gene tests in daily use)
- selection of treatment for colon cancer and determining treatment efficacy in melanoma
- assessing the risk of hereditary diseases and susceptibilities among the patient’s close relatives.
3. Why is the Genome Center being established in Finland?
Finns expect the healthcare system to provide the best possible care. Treatments have already advanced far, but there are still diseases that we do not know well enough yet. This poses a challenge to diagnosing and treating patients in the best possible way.
The Genome Center is being established to support the development of precision medicine in Finnish healthcare. Through the center, genomic data will be stored and made accessible in a uniform way so that people can benefit from the data equally and more often than at present in healthcare. Genomic data benefits both the person involved and the entire population.
The centralisation of data also benefits research and innovations because genomic data will be accessed at one service point without compromising privacy and data security. For sensitive genomic data, the center provides a storage place where individuals’ information can be controlled, supervised and protected against misuse.
The Genome Center is also needed to create an operating environment that, together with other healthcare activities, will make Finland an internationally sought-after partner for collaborations.
4. What does the Genome Center do?
The Genome Center acts as an expert resource on genomic data, providing guidelines and evaluating the responsible use of genomic data and genetic tests. The Genome Center’s most important task is to interpret the clinical relevance of genomic data and to provide guidance for their use, for example in patient care.
Our understanding of the clinical relevance and utility of genomic data increases with the advancement of science; it is therefore important for the Genome Center to support scientific research as well.
The Genome Center maintains a database where the genomic data of the population, produced for example in healthcare, research and biobanking, are stored. The Genome Center uses the stored data, for instance, to issue recommendations. The Center’s mission is to engage in active dialogue with citizens and to cooperate with national and international actors.
The Genome Center does not provide healthcare services for patients and does not deal directly with patients. The Genome center does not carry out genetic tests, provide analytical services, interpret individuals’ genetic test results or manage samples. Nor does the Genome Center own any research equipment or laboratories.
5. Who can use the Genome Center’s data?
Genomic data stored in the Genome Center may only be used for purposes of health promotion that the Genome Center has independently and objectively assessed and approved. The disclosure of genetic data for healthcare, research and product development will be regulated by a Genome Act.
People have the right to check and monitor the use of their data. If they so wish, people can also prohibit the use of their data. The Genome Center does not disclose an individual’s complete set of genomic data.
Statistics-level data can be disclosed anonymously so that no single person can be identified. If needed, the data are pseudonymised; for example, coded. For therapeutic purposes, a single person’s data may be released with an identifier. Data are not transferred outside the Genome Center physically; instead, the user is granted the right to access the data.
Obtaining data from the Genome Center is licensed and controlled. Only licensed persons, such as a physician participating in the care of a patient, have the right to use the genomic data stored in the center.
Data from the Genome Center may not be given to insurance companies or employers, or for criminal investigation, administrative decision making or determining consanguinity.
6. Which diseases will be benefit from genomic data the most speedily?
At present, the use of genomic data is proceeding the fastest in the diagnosis and treatment of cancers. The classification of many cancers and the selection of treatment are based on genetic studies.
Genetic data also help us to understand the causes and mechanisms of rare illnesses. The greatest benefit of genetic studies so far has been demonstrated in individuals or families that have been found to have a genetic disease or susceptibility. Watch a patient video
Aside from the prevention and treatment of diseases, genomic data change the use of medicines. Knowledge of the human genome makes it easier to select a drug that is efficient and suits the person.
The use of genomic data in research and the return of research findings to healthcare require persistence. Some of the new therapies may be in our midst within a few years while other solutions may take decades to develop.
7. How do doctors use genomic data in a patient’s treatment?
According to plans, the genome database would include an interpretation service helping doctors to search for and interpret data that are relevant to treating the patient.
The interpretation service could tell the doctor that a certain drug does not suit the patient for hereditary reasons, or which drug is likely to have the best efficiency for the patient. The interpretation service could recommend that the doctor orders a certain gene test that would benefit the patient or that relatives be tested when the person has been found to carry a certain risk gene.
The range of various genetic tests on offer is already so wide that not all doctors can update their knowledge as to which gene tests are the best and the most useful for patients at any given time. The Genome Center will provide guidelines for the use of genetic tests. These guidelines will also contribute to the realisation of equality between people in the use of genetic data.
8. What is the timetable for establishing the Genome Center?
Government proposal on a Genome center act will not proceed to Parliament in autumn 2018.
The Ministry of Social Affairs and Health will continue its preparations for the establishment of a Genome Center.
9. How do I benefit from the Genome Center?
An individual’s genomic data can be used in healthcare to promote the person’s health and treat diseases. The individual’s data may also be useful for close relatives, since the data also contain information on the relatives’ risk of developing a disease.
By using genomic data, some diseases can be prevented and diagnosed at an earlier stage than before. This will make the treatment of diseases more precise than at present.
The Genome Center will provide citizens with general advice on gene tests. The center can generate information about the human genome and its meaning for a person’s health and wellbeing. This information will be available to the general public online. Advice on the significance of the results of gene tests is available through healthcare.
10. Can I prohibit the storing of my genomic data?
With the individual’s consent, genomic data are generated from samples taken in healthcare if the patient wants genomic data to be used as an element of his or her care. At the same time, the individual is told about storing the data in the Genome Center. Consent enables the use of the data for purposes of health promotion.
If they so wish, individuals can prohibit the use of their own data. The prohibition does not affect the care received by the individual; but on the other hand, in an acute case, the person who refuses will not have data rapidly available in support of his or her own care.
Healthcare and researchers are required to inform the individual about storing genomic data. No collection campaign is being planned for gathering genomic data. Data are stored in the Genome Center as they are generated.
11. Can I trust that my genomic data are safe?
People can trust that the genomic data of individuals in the Genome Center are effectively protected against unauthorised use.
In the Genome Center, data are processed in a closed environment. A closed environment is protected so that the use of data can be monitored. From the Genome Center, interpretations of the significance of genomic data, as well as the results of analyses and studies, can be obtained.
Before the data are used, the personal details of individuals are erased and the data are given a new identification code. Thus, an individual cannot be identified from the research material. Statistics-level information can be disclosed in a fully anonymous manner.
12. Can an individual be identified on the basis of genomic data?
Identifying an individual simply on the basis of genomic data is virtually impossible. Something about an individual, for instance the gender, can easily be inferred on the basis of genomic data.
For genomic data to be linked to an individual, it should be possible to compare the data with other data obtained from the individual or registers.
If, for example, there is a fingerprint on paper, this does not allow us to infer that the person has green eyes. A person can be identified on the basis of a fingerprint only when there is a reference mark. The same is true for genomic data.
13. What sort of information security has been planned for genomic data?
Genomic data are sensitive personal data that must be protected efficiently. The Genome Center will have increased information security, which means that data are protected better than usually.
The details of information security are decided when the storing of data is planned. Genomic data must be handled in accordance with Finnish law, and the transfer of the data abroad is restricted by law.
Finland has high-level expertise for managing information security. The level of information security is constantly monitored and measures are taken to ensure that it is up to date.
The Genome Act is enacted to guarantee the high level of information security, to prevent the uncontrolled use of information and to maintain the population’s trust.
14. What data are stored in the Genome Center?
All genomic data in the Genome Center are used to build a public reference database, or statistics, that shows what genetic variants exist in Finland and how frequent they are. The data of an individual person cannot be identified from the statistical information collected.
This statistical information is used to form Finns’ reference genome by selecting the genetic variations that are the most common among Finns. The public database, for instance, serves laboratories when they interpret results.
The core of the Genome Center consists of the database that stores the genomic data of individuals, or in practice the raw data generated when the genome has been studied. These data are stored with identification data, but they are never released outside the Genome Center. It has been thought that the raw data will be used regularly for the identification of genetic variations, as the technology is advancing.
No other data on patients’ diseases are collected into the Genome Center.
15. What does it mean when genomic data are disclosed to a secure environment?
A secure environment means a restricted operating environment where data can be processed through a computer only in a predetermined manner. Genomic data are disclosed from the Genome Center only to a secure environment.
Researchers can only take measures agreed in advance and only on limited material. Researchers may only process data that have been disclosed to them by permission.
16. How can researchers and companies utilise genomic data?
The Genome Center serves researchers and companies in the manner determined in the coming Act on the secondary use of health data. Data are only given for use according to an approved plan in a restricted secure environment.
Primarily, the data are anonymised. If this is not possible, the combination of various health data takes place in a service operator, which pseudonymises the data so that the researcher does not know who the real person is. In practice, the individual’s personal identity code is replaced by a code. This means that the researcher does not know whose data are processed.
The Genome Act will define how companies can use the Genome Center’s database and how individuals can monitor the use of their data.
17. How are insurance companies and employers prevented from misusing the data?
The Genome Act will stipulate that data from the Genome Center may not be given to insurance companies or employers, or for criminal investigation, administrative decision making or for determining consanguinity. Discrimination based on genetic data is already banned by law.
Genomic data stored in the Genome Center may only be used for purposes of health promotion. Obtaining data from the Genome Center is licensed and controlled. This means that the uses planned by the actor are determined in advance. People can always check how their data are used.