The PhD thesis of Suchetana De, MSc, indicates the differences in ethical practices between the global commercial companies selling genetic tests online and the research setting in Finland regarding genetic testing and return of genetic test results.
In a research setting in Finland, the majority of the participants did not have high concerns related to the misuse of their genetic information in a nutrigenetic study concerning the APOE gene. The participants had high study-related knowledge, indicating their understanding of the information given in the study. However, commercial genetic tests, also known as direct-to-consumer genetic tests (DTC GT), are sold online and make the process of accessing genetic information very easy for anyone who can afford the tests. However, the practices of these companies raised serious concerns.
A questionnaire was developed to study ethical aspects of research revealing genetic information
The thesis studied the views and opinions of the Finnish participants about participating in genetic research. For the first time a comprehensive questionnaire was developed to study ethical aspects of research in which genetic information is revealed to the consented participants. The questionnaire was used in a nutrigenetic study conducted in Seinäjoki in Finland, in which the significance of genetic information on lifestyle was pursued. A genetic marker for the possibility to develop Alzheimer’s disease and cardiovascular diseases, that is, information on the APOE gene, was revealed to the participants on their consent. They were satisfied with the informed consent process of the study and showed positive attitude towards genetic research.
The websites selling genetic tests do not provide all relevant information about the tests
In Suchetana De’s thesis, the website-contents of DTC GT companies selling nutrigenetic tests, accessible from Finland, were studied. The websites through which these tests are sold do not provide all the relevant information about the tests. Proposed benefits of testing are highlighted on the websites, whereas risks are often not mentioned. Terms and conditions of the companies are mostly designed to protect the company and put major responsibility on the consumers. Consents are not routinely asked for using the consumers’ samples and genetic data for research or other purposes.
Genetic information needs to be protected
The unique genetic background of the native Finnish population in combination with well-maintained population records in Finland attracts researchers from around the world. Hence, genetic research is expected to only increase in the near future in Finland. Under these circumstances, it is important to know how the Finnish population feels about participating in genetic research.
On the other hand, commercial genetic testing or DTC GT is gaining popularity not only in Finland but globally.
“The genetic tests provided in research and in DTC GT may not yet be validated to be offered in public healthcare. It is, therefore, important to raise awareness about the unethical practices of these companies among the general public. Taken together, genetic information needs to be protected and handled very strictly as it can reveal sensitive personal information about the tested individuals and also about their relatives,” Suchetana De says.
The doctoral dissertation of Suchetana De, Master of Science (Toxicology), entitled Ethics of genotype disclosure, will be examined at the Faculty of Health Sciences. The Opponent in the public examination will be Docent Ritva Halila from the Ministry of Social Affairs and Health, and the Custos will be Professor Emerita Kirsi Vähäkangas from the University of Eastern Finland. The public examination will be held in English online on 18 June 2021 starting at 12 noon.