Tumor Genetics Blog

By: Sanna Heikkinen and Eetu Mäkinen

The blog was originally published in Finnish on 11 December 2024 at the Finnish Cancer Registry website Tutkimusetiikka ja arkaluontoisten terveystietojen käyttö tutkimuksessa – Syöpärekisteri

The use of sensitive health data, such as an individual’s medical history or genetic information, in research is undoubtedly beneficial in terms of improving the understanding of diseases and identifying risk factors. Identifying factors that affect the risk of developing cancer can lead to the development of effective evidence-based prevention strategies, thus improving the health of the entire population. However, the use of sensitive data in research raises ethical questions that must be carefully considered.

Valuable Research Data

Research based on individual-level health data is a cornerstone of evidence-based medicine and public health science. Sensitive health data is invaluable for discovering disease risk factors, developing more effective treatments, and confirming or challenging previous research evidence. Based on the evidence generated, better disease prevention actions, early detection methods, diagnostic techniques, and targeted treatments can be developed.

Research benefits both individuals and the population as a whole. An individual can directly benefit from better disease prevention efforts, such as bans and restrictions on substances identified as cancer-causing. Newer, more effective treatments are also direct outcomes of research that benefit individuals. If evidence-based health strategies are more widely implemented, the entire population will benefit. Health data is also used, for example, in assessing the disease burden of a population, enabling the efficient allocation of resources and quick responses to new health threats.

Risks to Privacy and Data Protection

Although the benefits of using individual health data in research are significant, the handling of sensitive data always involves risks. A central ethical concern relates to privacy and data protection. Health data is fundamentally personal and must be kept strictly confidential. Misuse or leakage of data can cause significant harm to individuals, such as stigmatization, discrimination, or emotional distress.

Despite anonymization of data, there is always a risk of re-identification, especially when datasets are combined with other publicly available information. Data protection measures must be kept up to date. Transparency is also crucial; individuals whose data is being used must trust that their information is being handled ethically and securely. To minimize risks, ethical principles and secure data handling procedures must guide the research process at all stages.

Evidence-based disease prevention, the development of new treatments, and the assessment of the population’s disease burden rely on high-quality sensitive health data. Both researchers and policymakers must ensure that the benefits of using individual health data for research—better disease treatment, more effective public health strategies, and a deeper understanding of diseases—are realized while respecting individual rights and human dignity. This not only promotes the reliability and acceptance of research but also benefits individuals and the society.

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