The research project (2014-2017) funded through SalWe SHOK programme GET IT DONE, focuses on usability of genomic information in health care – by both health care professionals and individuals and patients.
The project examines a pilot research project in Finland called GeneRISK. GeneRISK aims at introducing genetic knowledge about participants risks for cardiovascular event to 1) public health care 2) private health care and 3) to individuals themselves.
The research examines uses and usability of delivering information of genetic risk factors of CVD through electronic decision support system to the clinicians and through personal health account to the patients. In addition to the usability of genetic information through the interfaces we dwell in to the questions of the value and usability of genetic information as such.
Clinicians and nurses from both public and private health care are interviewed, with focus on the use of electronic decision support systems and views about advantages of information on genetic risks of CVD in clinical practice. In addition, focus group discussions with the patients and research participants recruited in the GeneRISK study are made. The themes of the focus group are focused on reception and understanding of personal genomic risk information in general and on experiences and expectations of the electronic personal ‘health account’ interface. The research looks also more closely to blood donors’ motivations and experiences of participating in GeneRISK and other research projects, their views about biobanking and receiving personal genetic risk information as a part of blood donation procedure.
The sociological research group:
Prof. Ilpo Helén, University of Eastern Finland
Dr Karoliina Snell, University of Helsinki