Data protection

As part of the DS3 work package, we want to create medical-ethical guidelines and legal standing for the operation of the Slovenian Genomic Project (SGP) in cooperation with experts from the fields of ethics, social sciences and law (ELSI).

 We have designed informative material and an informed consent form for patients and healthy subjects who will participate in the SGP. Both documents and the implementation of SGP have already been approved by the Republic of Slovenia National Medical Ethics Committee, which allows the inclusion of patients and healthy subjects in the SGP.

Within DS3, we also want to study the current medical-ethical and legal standings related to the scope of the SGP. This includes currently valid medical-ethical legislation regarding genetic testing and counselling, privacy and data management in concordance with GDPR. Exceptional care is taken when approaching vulnerable groups (e.g. children, pregnant women). This is important for the successful implementation of genomic medicine approaches in Slovenia and the operation of the SGP in Slovenia in the future. We plan to prepare strategic documents (e.g. recommendations) with ethical and legal guidelines for genomic medicine, which will be submitted to the competent authorities to create an appropriate legal basis for the field of genomics. All key stakeholders, relevant in this field, will also be included in this process.

We are also involved in international projects in the field of ELSI aspects of genomics (particularly the project 1 million genomes), where we represent the field in our country and have the opportunity to learn about good foreign practices and transfer them to our environment.