Project R-12618

Beyond the genome: Ethical Aspects of Large Cohort studies (Research)

The way we practice medicine now and in the near future will be different. One the one hand we have the ever decreasing costs of revolutionary technologies such as genomics, proteomics, wearables and miniaturization of laboratory tests such as ELISAs and PCRbased biomarker detection (among many other inventions). On the other hand, there is the trend to apply these technologies on a larger scale and transform medicine in a data-rich science, where highquality data from large cohorts will be used to gain new insights into diseases. This will lead to better and earlier diagnostics. The ultimate goal is preventing diseases, by taking preventive measures before the onset of a disease. This revolution in data gathering and also poses new ethical questions: First of all, pose these new technologies privacy risk for participants in the study? Second, how do we manage this sometimes sensitive data and who does actually owns it? How do we ask for consent in large cohorts with many different data types? What about incidental findings? The pilot study "I am Frontier" puts us in a good spot to provide answers and recommendations for these questions since we will have will many different data types (from genomics and proteomics to clinical and lifestyle data) of all participants and we can also chart their expectations and experiences. Especially for proteomics, we want to chart the privacy risks of this data type since, for now, it is considered non-personal data.

01 January 2022 - 31 December 2025