Study: Attitudes to the use of genomic data are positive - conditions set for the use of data
Finns' attitudes to the use of genomic data vary a lot. This was shown by a questionnaire study carried out for the use of the Genome Center working group. Most participants in the study felt that the use of genomic data in scientific research and healthcare is a positive opportunity if it can help to achieve better health.
The concept of genome was unknown to many of the focus group members participating in the study that examined people's attitudes to genomic data. On the other hand, the groups discussed genes and genetics fluently.
Almost all participants considered genomics research and the use of genomic data in research and healthcare to be a good thing. The most critical views came from persons who in the past had had negative experiences of healthcare, healthcare information systems or the services provided by society on the whole.
People wish to make use of their own genomic data
The focus group members underlined the importance of planning the Genome Center and projects associated with genomic data so that they would primarily support people’s health and wellbeing. Commercial exploitation of the data raised doubts. It was also feared that inequality would increase and the healthcare system would have insufficient resources for the use of genomic data.
The focus group members set conditions and restrictions for the use of genomic data. Especially among younger group members, the reception and possible own use of one’s own data were often seen as a prerequisite for donating the data.
Participants' motives for supporting genomics research were linked, in particular, with people’s own experiences of hereditary diseases. It was hoped that genomics research would help – if not the participants personally – then at least others in the same situation.
Most participants hoped that they would be asked for their consent to the storage and use of genomic data. Young people hoped that consent be asked, whereas older participants thought that permission would not necessarily have to be sought.
How was the study conducted?
In October 2016, the Ministry of Social Affairs and Health appointed a working group to plan the establishment of a Genome Center. At the working group’s initiative, the Ministry of Social Affairs and Health commissioned a study on people’s attitudes to genomic data. Karoliina Snell, D.Soc.Sc., of the Faculty of Social Sciences of the University of Helsinki, was responsible for the study.
The report presents research findings from eight focus groups that discussed genomic data, their diverse uses, the risks and expectations associated with the data, and the establishment of a national Genome Center.
The focus group discussions were organised in four localities: Helsinki, Vantaa, Jyväskylä and Oulu. The groups had a total of 44 members, of whom 29 were women and 15 men. The youngest participant was 20 years old and the oldest 62 years old. The groups were assembled to represent different population segments or groupings.
Focus group discussions about genomic data, Report for the use of the Genome Center working group
Karoliina Snell, D.Soc.Sc., Faculty of Social Sciences of the University of Helsinki, tel. +358 50 319 9378, [email protected]
Liisa-Maria Voipio-Pulkki, Director, Ministry of Social Affairs and Health, tel. +358 2951 63382, [email protected]