Table 2 Overview of how values are addressed by each platform

Scientific value

Data quantity and quality is determined by the users who upload data.

Data quantity and quality is determined by the users who upload data.

Data quantity and quality is determined by the users who upload data.

Established genomic databases; Genomic profiles and phenotypes uploaded by users.

Data quantity and quality is determined by the users data upload.

User protection

Privacy policy.

Require users’ consent to share general data.

Require users’ consent to share specific set of data.

Privacy policy.

Require users’ consent for all sharable data.

Strong encryption and data access log.

Only users can access their data.

Password protected profile. No information about security features yet.

Privacy policy.

Users receive a system report with all the system changes (edits, data usage, etc.).

Facilitating user agency

Users are responsible for choosing apps of interest and for the data uploaded.

Users decide whether or not to share their data and to which research studies.

Members can participate in cooperative decisions.

Users decide whether or not to share their data and to which research studies.

Members can participate in cooperative decisions.

Features stressing user agency might be included in the future (the platform is still underdeveloped).

Users decide whether or not to share their data and to which research studies.

Users can also decide who is going to see the data.

Possibility of joining patient communities.

Trustworthiness

The services have to pass Taltioni’s audit.

Disclose which data is going to be shared and with whom.

Each use of data has to be disclosed to the users.

Platform IT code is open source. Every research project will need ethical committee approval.

Developed within public sector (which might increase trust).

No other relevant information is provided.

The familiar environment promoted by patient communities ensures trust in the platform.

Benefit

Users can choose apps of their own interest and receive self-help and well-being services.

ICT companies can offer paid services and develop another apps and services.

Profit (in cash or not) is divided between participant users. Private investors could also benefit (in cash or not).

Upgrade of the services provided by the platform.

Patients may benefit from different health care from the increased knowledge of health professionals in genomics.

Users can benefit from networking engagement.

Researchers benefit from using data.

Sustainability (Funding)

Cooperative of Finnish government and ICT companies.

Cooperative and associated commercial company. Investments of partners and members/users.

Users fees (users and end-users such researchers); research grants, citizen loans.

Public national and international grants.

Public and private funds and crowdsourcing.