We don't trust you
Most people are not ready to donate their DNA for research
The international project "Your DNA, Your Say" showed that about every second person agrees to provide their genetic information for analysis to doctors, but people are much less willing to share it with scientists.
An international group of scientists has published the results of a large-scale project to study public opinion regarding the collection of DNA from citizens (Middleton et al., Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?).
According to data obtained in 22 countries around the world, most people do not want to share their genetic material.
The project "Your DNA, Your Say" was organized and implemented by researchers from different countries within the framework of the Global Alliance for Genomics and Health (GA4GH). The data were obtained using a cross-online survey of participants collected around the world by the Dynata research company, with some exceptions: in Japan, the recruitment of participants was conducted by Cross Marketing, and in Pakistan and India by Foresight and Maction, and in these countries the methods were adjusted to take into account poor Internet access.
The online questionnaire contained 29 questions. In particular, participants were asked to indicate whether they were ready to entrust their DNA or medical information to "my doctor", "any doctor in my country", "any scientist from a budget institute in my country", "any researcher from a commercial company" and "representatives of the authorities". Three possible answers were offered: "In general, I would trust", "I'm not sure" and "I wouldn't trust".
The analysis examined associations with three predictors: understanding the basics of genetics, views on DNA and medical information, as well as trust in the organization to which the data is provided. The results were adjusted taking into account socio-demographic variables (age, gender, availability of children, higher education and religiosity).
The researchers clarify that the very concept of anonymity needs comments when it comes to DNA. When collecting data, scientists deleted personal information of survey participants, personal identifiers, such as name and date of birth. However, human DNA is unique, which means that the results of genome analysis by themselves can be used to identify a person. However, instead of the term "deidentification", the term "anonymity", which was more understandable to the survey participants, was used.
The final sample included data from 36,268 participants from 22 countries: Argentina (919), Australia (1,212), Belgium (544), Brazil (1,349), Canada (2,966), China (3,008), Egypt (1,427), France (790), Germany (1,193), India (482), Italy (1229), Japan (4748), Mexico (1347), Pakistan (925), Poland (2904), Portugal (2224), Russia (1075), Spain (1272), Sweden (821), Switzerland (333), Great Britain (3,407) and the United States America (2093).
According to the data obtained, more than half of the survey participants did not want or were not sure that they could provide scientists with their DNA and medical information, even on condition of anonymity. At the same time, the majority of respondents (52%) were willing to share their DNA with doctors, but only a third – with scientists from commercial research institutions. They were more willing to provide DNA for non-commercial research.
Only 35.8% of the survey participants had an idea of the basics of genetics (or personal experience of getting acquainted with genetic diseases – the disease of their own or relatives, working with such patients). Such people were more often willing to provide their DNA for research.
In general, slightly more than half (53%) believe that DNA analysis data differ from other types of medical information, but different views prevail in different countries. For example, in Mexico and Italy, 65% of survey participants believed that DNA was a special category of medical data, while in Russia only 31% of respondents held a similar point of view. But ideas about the exclusivity of DNA as a kind of information about a person did not affect the willingness of citizens to share it for research.
So, the key factor in deciding to donate a DNA sample is trust in certain structures. The population trusts doctors and non-profit organizations more. The second important factor is the availability of knowledge in the field of genetics. These results indicate the need to conduct educational work among the population and increase the level of trust of citizens in structures engaged in DNA research.
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