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Uncovering Individuals’ Motivational Factors for Making their Genomic Data Accessible for Research

Contact: Scott Thiebes, Ali Sunyaev

Project Status: active


Since the completion of the Human Genome Project in 2003, the price for sequencing a human genome has dropped from more than 53.000.000 $ to less than 1.500 $. Thus, the long-held dream of precision medicine is no longer a distant vision but becoming a reality that is steadily finding its way into clinical practice. Today, precision medicine allows for the targeted treatment of individual patients according to their individual needs, effectively lowering overall morbidity and mortality.

While the large-scale sequencing and analysis of human genomic data are the building blocks of precision medicine and necessary prerequisites for human genomic research, they also come with inherent information privacy challenges. Disclosure of private genomic data is prone to stigmatization and discrimination for data donors and might, for instance, lead to a loss of insurance or employment. Nonetheless, hundreds of individuals decided to make their genomic data accessible for research in the past and an increasing number of individuals is continuing to do so.

Considering this precarious situation, the question arises, what motivates individuals to make their genomic data accessible for research? As part of our multidisciplinary cancer genomics research project MILES (http://www.aifb.kit.edu/web/MILES) that is funded by the German Federal Ministry of Education and Research, we are especially interested in uncovering the motivational factors for or against the disclosure of human genomic data. Thus, we are looking for individuals that have made their genomic data accessible for research or have considered to do so in the past, who are willing to participate in an online real-time Delphi study during March 2017.

If you are interested in supporting our research and participating in our real-time Delphi study, please contact us directly via scott.thiebes(at)kit.edu.

Involved Persons
Ali Sunyaev, Scott Thiebes



Research Group

Critical Information Infrastructures (CII)

Publications Belonging to the Project
 - inproceedings
 - book
 - incollection
 - booklet
 - proceedings
 - phdthesis
 - techreport
 - deliverable
 - manual
 - misc
 - unpublished