Public health genomics: guiding policy towards a responsible pursuit of health benefit
Growing knowledge about DNA offers opportunities for public health, but requires careful choices
New DNA knowledge and DNA technologies offer major opportunities for public health, but also require careful implementation and broad collaboration. This is shown by research conducted by Suzanne Onstwedder, affiliated with the RIVM and the Department of Human Genetics at Amsterdam UMC, on the responsible application of genetic information within and beyond public healthcare.
More possibilities for prevention and treatment
Knowledge about our DNA is growing rapidly. As a result, new opportunities are emerging to detect diseases earlier, improve diagnoses, and better tailor treatments to individual patients. DNA research can provide insights into hereditary conditions, as well as genetic risks for common diseases such as cardiovascular disease or cancer. Early detection through screening and more targeted treatments can lead to health gains. According to Onstwedder, these developments could significantly strengthen public health.
Complex and sensitive
At the same time, genetic information is complex and sensitive. DNA is unique to each individual and contains information about personal traits and health risks. Moreover, family members share part of their DNA. A test performed on one person can therefore also reveal information about relatives - sometimes without their knowledge or consent. In her research, Onstwedder emphasizes the need for careful consideration of potential risks, such as unwanted knowledge about hereditary predispositions, privacy infringements, and uncertainty about what information is needed for citizens and patients to make informed decisions.
Also beyond healthcare: large-scale research and self-tests
Onstwedder mainly examined applications outside regular healthcare in two domains: large-scale scientific DNA research and the market for commercial direct-to-consumer DNA self-tests. In these contexts, it is especially important to carefully consider quality, reliability, and guidance. Through self-tests, citizens can obtain information about their genetic predispositions without the involvement of a physician. This increases accessibility, but also raises questions about interpretation, privacy, and potential anxiety.
Collaboration crucial for responsible application
Onstwedder concludes that technological research and progress alone are not sufficient. In addition to technical and clinical research, ethical, societal, and legal analyses are also necessary. Responsible use of DNA technology therefore requires collaboration among many stakeholders, including researchers, healthcare professionals, policymakers, legal experts, ethicists, citizens, and patients. Doctors and researchers must carefully consider which genetic information they generate and communicate back. At the same time, citizens and patients must be well informed about the possible consequences of a DNA test.
Ongoing dialogue needed
Because knowledge about DNA is continuously evolving, encouraging dialogue among professionals from different disciplines and society at large is essential. Only by bringing together different perspectives can responsible use be defined - now and in the future. DNA technology offers many opportunities to improve health, but requires care, transparency, and shared responsibility to use those opportunities safely and fairly. “The lessons from my research help RIVM move forward in research and policy advice for ministries, such as the Ministry of Health, Welfare and Sport,” said Onstwedder.
More information on the thesis