Conditions and questions before implementation

Considerations and questions about the implementation and application of DNA technologies go beyond technological aspects. It is important to broadly explore the questions that arise in the development and use of DNA technology in a society. Some examples of questions include:

• What laws and regulations must the DNA tests comply with?
• How can DNA data be stored safely?
• Which bodies, such as hospitals or research groups, can carry out DNA tests, and under what conditions?
• What information do people need to make an informed choice about carrying out a DNA test?
• How should we deal with DNA tests carried out on children?

In the report ‘DNA technology for the Dutch population ‘(Dutch report, English synopsis), RIVM describes how DNA technology can help improve the health of the Dutch population. To this end, RIVM spoke to health care providers, scientists, patient representatives and product manufacturers. They mentioned several conditions, such as paying sufficient attention to societal perspectives and public values regarding DNA technology. The storage and safe use of DNA data are also important topics.

Use and re-use of DNA data for research

In health care, screening programmes and research, health data, such as DNA data, are collected for various purposes. In health care and in screening programmes, this is done in order to be able to carry out care and screening. In research it is done to increase our knowledge about health. The new European Health Data Spaces (EHDS) legislation describes how we should handle health data responsibly, and how the use of these data can strengthen care, screening programmes and research. These health data also include DNA data. 

Responsible handling of DNA data raises additional questions in some areas, partly because DNA data is sensitive and DNA from family members partly matches each other. Together with experts, RIVM has worked out considerations regarding the re-use of DNA data from health care and screening programmes for carrying out research in a workshop. Preventing risks regarding data traceability and misuse and providing adequate information to citizens and patients are important concerns.

Use of DNA tests for newborn screening

Within the research project CRADLE, a collaboration between RIVM and Amsterdam UMC, research is being conducted into the ethical, legal and societal considerations arising from the use of DNA tests in newborn blood spot screening. For example, RIVM is investigating how the public and parents think about this and what practical, ethical or technical obstacles professionals foresee.

DNA modification in embryos

Another DNA technology under development is germline editing, which entails modifying DNA in sperm cells, fertilised eggs or unfertilised eggs. This technology may be used to prevent serious hereditary diseases, but experts are still debating if and how this can and should be used. RIVM has organised group discussions with citizens about DNA modification in embryos. These group discussions were intended as preparation for a broad societal debate on this topic. You can find more information on the societal debate on the website of De DNA Dialogen (in Dutch).