Privacy notice

1. Data controller and contact details

THL decides and is responsible for the processing of personal data for the purpose described in this notice; THL is the data controller for this data. 

Our contact details are: 
Finnish Institute for Health and Welfare (THL) 
P.O. Box 30 
FI-00271 Helsinki 
Tel. +358 29 524 6000 

THL’s Data Protection Officer’s e-mail address is [email protected]. 

Responsible leader of the Future Finland birth cohort project: Annamari Lundqvist, Project Director, Future Finland, [email protected] 

Contact person for matters relating to the processing of personal data: Birgit Simell, Project Manager, Future Finland. [email protected] 

When data collection for the Future Finland data repository begins in the HUS area, the following organizations act as joint controllers: 

• Hospital District of Helsinki and Uusimaa (HUS) 

Contact person for matters relating to the processing of personal data: Saila Koivusalo, Senior Research Physician, [email protected] 

THL may also cooperate within the framework of collaboration agreements, with partners based in other organisations. For the duration of the agreement, the collaboration partners will act as joint controllers for limited sub-datasets.

The data are transferred to the partners in a way that removes information that could enable the identification of an individual participant. The joint controllers, and the sub-datasets transferred to them, will be described in this privacy notice. 

In all cases, THL is responsible for the controller’s obligations as specified in more detail in the General Data Protection Regulation. 

Participants may submit any requests related to this study for exercising the data subject’s rights (see section 11) to the contact person mentioned in section 1. The contact person will, where necessary, forward the request to the other organizations acting as joint controllers.

2. Purpose of processing personal data

Future Finland birth cohort is a nationally and internationally unique data repository designed to support population health and wellbeing and to strengthen Finland’s welfare society in the decades to come.

The implementation of the Future Finland data repository is coordinated by the Finnish Institute for Health and Welfare (THL) and funded by the Finnish Cultural Foundation. 

The data repository is used in scientific research and other projects that examine how factors acting at different stages of life shape health and wellbeing over the long term. The repository that is being collected enables these factors to be explored broadly from both an individual and a societal perspective. The aim is to promote population wellbeing and safeguard the welfare society in the future. 

Use of the material requires an appropriate data permit, and its processing complies with applicable legislation and research ethics principles. When processing the research material, participants’ direct identifiers – such as name, personal identity number, and address – have been removed. Everyone who processes the material is bound by a duty of confidentiality. Research results are always published in a way that individual people cannot be identified. 

The Future Finland birth cohort data repository collects information on children born between 2025 and 2029 and their families throughout their entire lives. Information is collected from registers and other national data sources (see section 4). Important information that is not available directly from registers is collected through questionnaires and by analysing blood samples collected for screening purposes during pregnancy, at birth and shortly thereafter, if families give consent for this. Giving consent is voluntary, and families may also later prohibit the use of the data (see section 11). 

The birth cohort will be followed throughout a person's lifetime, i.e. for several decades.

3. Legal basis for processing personal data

The processing of personal data is always based on applicable legislation. 

The lawful basis for the processing of personal data described in this notice is: 

• Scientific research in the public interest (Article 6(1)(e) of the General Data Protection Regulation and section 4(3) of the Data Protection Act (1050/2018)) 
• Carrying out a statutory task (Biobank Act (688/2012) and Act on the National Institute for Health and Welfare (668/2008)) 

In addition, the processing of data belonging to special categories of personal data is based on the following condition set out in Article 9(2) of the General Data Protection Regulation or section 6 of the Data Protection Act (1050/2018): 

• Scientific or historical research purposes or statistical purposes 

The following special categories of personal data are processed in the Future Finland data repository: 

• Racial or ethnic origin 
• Data concerning health 
• Sexual behavior 
• Sexual orientation 
• Potentially, at a later stage, genetic data (sample donors) 

4. Personal data processed

The Future Finland project will build up a multidisciplinary data repository that will accumulate over time. The data relate to health, psychosocial wellbeing, school and working life, leisure time, services and benefits, as well as environmental health, living conditions and safety. 

The data repository compiles information from registers and other national data sources. Important information that is not available from registers is also collected from families through short questionnaires. In addition, consent is requested to include blood samples taken during pregnancy and in connection with childbirth in the Future Finland project. By combining these data, valuable insight is gained into how the wellbeing of children, young people and families develops. 

The code register contains the participant’s name, personal identity number, the code key (i.e. the birth cohort code), as well as dataset-specific identifying study codes and disclosure codes. The data in the code register is kept separate from the actual data repository, and access is restricted to persons for whom it is necessary for the performance of their duties. 

The data repository collects information on the following persons (as applicable):

• the child
• the mother
• the other parent/guardian
• siblings 

Unique identifier: birth cohort code 

Questionnaire data

Information collected via questionnaires on the wellbeing and health of the participating families. 

The exact data contents of the questionnaires are available in the Data Catalogue (to be updated). 

Samples

(See also the THL Biobank privacy notice) 

• Pregnancy: a blood sample collected in connection with screening examinations 
• Newborn: umbilical cord blood sample; residual sample from newborn screening for rare diseases 

Data derived from samples: 

• Data to be determined from the samples at a later stage will be listed here. 

Measurements 

• Babies’ body composition 

Registers and national data sources 

Information is collected from registers and national data sources also retrospectively and is updated on an ongoing basis. Information is collected from the following controllers: 

• Digital and Population Data Services Agency 
• Finnish Institute for Health and Welfare (THL) 
• Social Insurance Institution of Finland (Kela) 
• Finnish National Agency for Education 
• Statistics Finland 
• Ministry of Economic Affairs and Employment 
• Finnish Centre for Pensions 
• Finnish Tax Administration 
• Finnish Environment Institute (Syke) 
• Finnish Defense Forces 
• Wellbeing services counties (data from maternity and child health clinics and school health services) 
• Early childhood education and schools data 

More detailed data contents are described in Appendix 1. 

5. Sources of personal data

• Registers 
• Participants (samples, questionnaires) 
• Wellbeing services counties (data from maternity and child health clinics and school health services) 
• Other data sources, such as schools 

6. Disclosure of personal data

The material in the data repository may be disclosed in accordance with the Act on the Secondary Use of Health and Social Data (552/2019) or the Biobank Act (688/2012). The material in the data repository may also be used and transferred, on a contractual basis, for collaborative projects pursuant to the Act on the National Institute for Health and Welfare (668/2008). The data are transferred to collaboration partners in a way that removes information that could enable the identification of an individual participant.

7. Transfer of data outside the EU or the European Economic Area, or to international organizations

A data permit may be granted, and data may be transferred outside the EU or the EEA in a way that removes information enabling the direct identification of the participant. 

The transfer of personal data is based on the following transfer mechanism: 

• A European Commission adequacy decision 
• Standard Contractual Clauses approved by the European Commission 

The transfer is necessary for reasons of important public interest, such as the prevention of infectious diseases. THL has assessed the risks related to the transfer of personal data and implemented sufficient supplementary safeguards to ensure that the level of data protection in the EU is maintained. 
 

8. Profiling and automated decision-making

THL does not carry out automated decision-making based, for example, on profiling of individuals. 

9. Principles and measures for protecting personal data 

The personal data processed in this project are confidential. 

Measures for protecting data processed in information systems: 

• Access management 
• Data encryption 
• Logging 
• Physical access control 

Processing of direct identifiers: 

• Direct identifiers are removed, and the data are pseudonymized before the analysis phase.

10. Retention of personal data 

The retention periods for personal data are determined in accordance with data protection legislation, the Archives Act (831/1994), the Act on Information Management in Public Administration (906/2019), and THL’s information management plan. 

Material containing personal data is archived with identifiers on the basis of archiving legislation. Due to the nature of the project, the retention period for personal data is exceptionally long, lasting for several decades. 

The birth cohort will be followed over the entire lifespan, i.e. for several decades. 

As this is a long-term birth cohort project in which participants are followed through different stages of life, the processing of personal data is long-term. The scope, necessity and proportionality of the processing of personal data are regularly assessed throughout the project’s lifecycle. The assessment is based on the study’s current objectives and the requirements of the applicable legislation. 

11. What rights do you have?

Data protection legislation grants you certain rights that help ensure the realization of privacy protection as a fundamental right. If you wish to exercise your rights, follow these instructions: Data protection or alternatively contact THL’s Registry ([email protected]). 

In certain cases, your rights may be restricted, for example due to THL’s statutory obligation or if the processing is carried out for scientific research, statistical purposes or archiving. If your rights have been restricted, THL will implement the appropriate and necessary safeguards required by legislation. 

If THL is unable to identify you from the material, the rights to access, rectification, erasure and restriction of processing, among others, will not apply. 

11.1. Right to withdraw consent 

Please note that, as a rule, the processing of data in this project is based on legislation and not on the consent you have given. 

If we process your personal data on the basis of your consent, you have the right to withdraw that consent. 

11.2. Right of access to your personal data 

You have the right to know whether THL processes personal data relating to you. You have the right to know what personal data relating to you is processed and how it is processed.

You also have the right to obtain a copy of your personal data, insofar as providing a copy does not adversely affect the rights and freedoms of others, and unless THL has a legal basis for refusing to disclose the data. 

11.3. Right to rectification 

 In principle, you have the right to rectification of inaccurate or incorrect data. 

11.4. Right to erasure 

You may have the right to have your data erased from this project’s data repository. 

If the processing is based on THL’s performance of a statutory task or if there is another legal obligation to retain the data, your right to erasure is likely to be restricted. 

11.5. Right to restriction of processing 

You may have the right, in situations laid down by law, to restrict the processing of personal data. This may apply, for example, if you consider the personal data relating to you to be inaccurate, if the data is processed unlawfully, or if you have objected to the processing of your data. In such cases, we may process your personal data only with your consent, for the establishment, exercise or defence of legal claims, for reasons of public interest, or for the protection of the rights of another person. 

11.6. Right to object to the processing of personal data 

You may have the right, in situations laid down by law, to object to the processing of personal data. This may apply, for example, if data is used for direct marketing purposes. 

11.7. Right to lodge a complaint with a supervisory authority 

You have the right to have the lawfulness of the processing of personal data assessed by the Data Protection Ombudsman. 

Contact details: 

Office of the Data Protection Ombudsman 
Street address: Lintulahdenkuja 4, 00530 Helsinki 
Postal address: P.O. Box 800, FI-00531 Helsinki 
Switchboard: +358 29 566 6700 
Email (registry): [email protected]

Appendix 1. Registers and national data sources

Digital and Population Data Services Agency (DVV) 

• Gender 
• Date and place of birth 
• Municipality of residence; municipality of residence at birth; residential history 
• Foreign country of birth; date of immigration, 
• Nationality 
• Marital status; marital status history 
• Mother tongue; language of service 
• Family relationship; number of persons in the household; parental role; information on with whom the child lives 
• Possible date of death 
• Country of birth of the child’s grandparents

Statistics Finland 

• Causes of death 
• Highest completed qualification 
• Occupation
• Socio-economic status 
• FOLK personal data module  
• EDUC education module 
• TAX income data module 
• INFRA location data 

More detailed data contents are described in the Taika research data catalogue.

Finnish Institute for Health and Welfare (THL) 

• Care Register for Health Care (HILMO) 
• Register of Primary Health Care Visits (Avohilmo)  
• Finnish Cancer Registry  
• Mass Screening Registries (cervical, breast and colorectal cancer) 
• Child Welfare Register 
• Register of Induced Abortions 
• Medical Birth Register and its sub-register Very Preterm Infants 
• Assisted Reproduction Register 
• Infectious Diseases Register 
• Vaccination Register 
• Healthcare-associated Infections Register  
• Social Assistance Register  
• Social Welfare Monitoring Register 
• Mediation in criminal and civil matters 

More detailed data contents are described in the Data Catalogue.

Social Insurance Institution of Finland (Kela) 

• Conscripts: recipients of and payments of conscript’s allowance 
• Housing benefits: recipients of and payments of general housing allowance  
• Kanta Patient Data Repository: laboratory statements, laboratory results, microbiological findings, procedures, physiological measurements, risk information, vaccinations, diagnoses 
• Kanta Social Welfare Client Data Repository; Kela pension benefits: paid pension benefits and their recipients; Rehabilitation: recipients of rehabilitation allowance and paid benefits, recipients of rehabilitation services and payments  
• Families with children: payments of child home care allowance, payments of maternity grant, payments of parental allowances 
• Medicines: Kanta Prescription Centre: medicine dispensations; Kanta Prescription Centre: prescriptions; Kela benefit data: medicine dispensations reimbursed under health insurance; Kela benefit data: medicine reimbursement entitlements 
• Illness: paid periods of sickness allowance, recipients of special care allowance 
• Unemployed: payment data on unemployment benefits 
• Insurance coverage: insurance periods 
• Disability benefits: payments and recipients 

Finnish Centre for Pensions (ETK) 

• Pension register (pensions, decisions),  
• earnings register,  
• unpaid periods 

Ministry of Economic Affairs and Employment (MEAE) 

• Employment, search for job and employment service data 

Finnish National Agency for Education (EDUFI) 

• VIRTA Study Information Service: study attainments and degree data from higher education institutions 
• VARDA: the national data warehouse for early childhood education and care 
• KOSKI: national data repository for basic education, general upper secondary education and vocational education and training 

Student admissions register 

• Finnish Environment Institute (Syke) 
• Geospatial and map datasets (environmental information, not individual-level data) 
• Finnish Tax Administration

Finnish Defence Forces 

• Data describing conscripts’ health and functional capacity 

Wellbeing services counties 

• Data from maternity and child health clinics and school health services 

Early childhood education and schools data 

E.g.  

• Participation data 
• Standardized assessments (e.g. ALLU reading test, Move! measurement) 
• Decisions on intensified/special support  
• Grades