Playing a part in research? University students' attitudes to direct-to-consumer genomics.
OBJECTIVE
This study examined the attitudes of 1,146 Swiss University students to direct-to-consumer (DTC) genomic testing and to genomic research participation.


METHODS
Data were collected through a self-completion online questionnaire by students from 2 higher education institutions in Zurich, Switzerland. The survey aimed to capture motivation for undergoing or refraining from genomic testing, reactions to mock genetic risk results, and views about contributing data to scientific research. Descriptive and inferential statistics were used for the analysis.


RESULTS
A total of 1.5% of the students had undergone testing. Most respondents were studying natural sciences and were interested in undergoing DTC genomic testing. The main motive was to contribute their data to scientific research, followed closely by their interest to find out disease risks and personal traits. Overall, 41% of the respondents were not interested in DTC tests. The primary reasons were concerns about receiving potentially worrying results. There was a significant correlation between studying natural sciences, as opposed to the humanities, and interest in undergoing testing. Male respondents were more interested in testing compared to females. There was a strong interest in genetic research participation and notably limited privacy concerns.


CONCLUSIONS
Although 59% of the respondents were interested in DTC genomic testing, they were not likely to be affected by them or act upon them. This raises questions about concerns relating to potential risks of DTC genomics users and users' understanding of genetic information including their awareness of privacy risks. Furthermore, the strong interest in genetic research participation signals an underexplored personal utility of genomic testing which needs to be both better understood and better harnessed.
Institute of Biomedical Ethics, University of Zurich, Zurich, Switzerland.
Effy
E
Vayena
Christian
C
Ineichen
Elia
E
Stoupka
Ernst
E
Hafen
D000328:Adult; D001290:Attitude; D003256:Community Participation / Q000523:psychology*; D003625:Data Collection; D005260:Female; D020022:Genetic Predisposition to Disease / Q000523:psychology; D030661:Genetic Privacy / Q000523:psychology; D036281:Genetic Research; D005820:Genetic Testing; D023281:Genomics; D006801:Humans; D008297:Male; D009042:Motivation; D057285:Precision Medicine / Q000523:psychology; D015203:Reproducibility of Results; D013334:Students / Q000523:psychology*; D011795:Surveys and Questionnaires; D013557:Switzerland; D014495:Universities; D055815:Young Adult