One in three Finns would be willing to reassess their lifestyle if they had more specific information on their personal hereditary risk factors, according to a survey. The majority of Finns have a positive view of the proliferation of genetic testing in healthcare. But the most important development objective according to many is to develop legislation so that genetic information does not end up in the hands of external parties.
The information was gathered in a survey targeted at members of the public and physicians, commissioned from Taloustutkimus by Sitra in December 2013. The study investigated the attitudes of over 2 000 Finns towards the charting of hereditary risk factors.
According to the study, a third of respondents (31%) would reassess their lifestyle if they had more specific information on their personal hereditary risk factors. Just over half (54%) would at least consider reassessing their lifestyle if such information were available.
Almost two thirds of people who took part in the survey (61%) said they were interested in finding out about their personal hereditary risk factors, but most respondents (84%) had no knowledge of where genetic testing could be carried out. More information is needed on genetic tests and their effects.
“Many Finns are not too familiar with genetic information and charting hereditary risk factors. For citizens, the main source of information is the media (52%). Only three per cent of respondents said they had received genetic information from a physician,” says Senior Lead Tuula Tiihonen of Sitra.
Genetic information as a tool in welfare planning
For men, the most important reason for genetic testing is curiosity. Women, on the other hand, want to find out their susceptibility to diseases. “One in four considering genetic testing say the primary reason is using the information as part of their personal welfare plan,” says Tiihonen.
Fully 78% of physicians registered a positive view of the proliferation of genetic testing, comparable to the 73% of those replying to the survey who described themselves as having a positive or very positive view. The majority of people consider more extensive use of genetic testing in healthcare very important. In particular, citizens also want tests to be available in some other way than as commercial services ordered on the internet.
The most significant difference of opinion between doctors and their patients concerns who should make the decision on charting hereditary risk factors. Almost every second respondent (45%) said that every adult should be able to decide on the matter personally, whereas only eight per cent of GPs were of the same opinion.
“Physicians think the decision on genetic testing belongs almost without exception to healthcare professionals. This view is based on the physicians’ concern that genetic testing can cause unjustified worry. Genetic tests are regarded as unnecessary, for example, when risks cannot be prevented, or when there is no medication or treatment for a disease,” says Tiihonen.
Concern over discrimination
Both citizens and physicians seemed to agree that patients themselves should be the owners of their personal genetic information. The majority of medical professionals surveyed (71%) thought that genetic testing should be offered free to selected groups of patients. It seems people are even willing to pay for the test, being most tempted by the option where all those interested would be offered the test for a small fee (34%).
But many respondents to the questions said they were most concerned about any test results ending up in the hands of external parties. A further concern was that the test results could lead to discrimination by an employer or insurance company, for example. There was an emphasis on the development of legislation that enables a consumer to have a genetic test without having to fear of results being possessed by external parties. Concern over the reliability of the interpretation of test results also dampened people’s interest.
“The study confirms our view of the importance of national guidelines that apart from legislative issues also focus on ethical questions often related to genetic research,” says Director Antti Kivelä of Sitra.
Sitra is pushing for the adoption of genetic information in healthcare by funding a trial investigating the hereditary risk of cardiovascular disease among a limited research group. One goal is to find out how genetic information affects a person’s health-related behaviour. The trial will be implemented by the Institute for Molecular Medicine in Finland (FIMM) and the Finnish Red Cross Blood Service. The trial is due to begin in spring 2014.
Commissioned by Sitra, Taloustutkimus investigated the knowledge and attitudes of people on the use and ownership of genetic information. The study also surveyed the attitudes towards genetic tests, the concerns related to such tests and the question of who should make decisions on genetic testing. The target group of the study consisted of a representative sample of Finns over the age of 15 who use the internet. The number of respondents was 2,071. The study was carried out in December 2013.
More information: http://slidesha.re/1gEpEFu (in Finnish)