While people generally like the idea of a federally developed, nationwide database aimed at improving medical treatments, many are not keen on giving up their own medical information, a new survey shows.
Those who would participate in the proposed 1-million member Precision Medicine Initiative also favored more discrete control mechanisms over who gets to use their data, compared with issuing researchers a blank check on data use.
The online survey of 2,601 Americans was conducted in May and June by pollster GfK and paid for by the Foundation for the National Institutes of Health. Results were written up by NIH employees and published in the online journal PLOS One.
Respondents were asked to read a detailed description of the government's plans to create the Precision Medicine Initiative cohort and its research aims and then asked various questions about their attitudes toward it.
A substantial majority of respondents favored the idea of the longitudinal study, with 22% indicating they “definitely” think it should be done and 57% responding it “probably” should be done. Only 21% responded with “probably not” and 5% “definitely not.”
The favorability numbers dropped a bit when respondents were asked if they'd participate themselves, with just 14% saying they'd “definitely” participate and 40% indicating they “probably” would.
If they were participating, respondents were largely open to providing personal information, including diet and exercise (84%); family history (77%); test samples for hair, urine or saliva (73%); and blood (73%), but drew a much tighter line on social media information (43%).
The survey presented four consent models for respondents to choose from if they decided to participate in the Precision Medicine Initiative. The most popular was the so-called “menu” option, favored by 75% of respondents, in which participants in the cohort “could select the kinds of research (for example, cancer, diabetes) that you would or would not want your samples and information used for.”
A close second (73%) was the “dynamic” consent model in which participants could opt-out of specific studies. The third choice (72%) was an opt-in model in which participants could join a research project on a “study-by-study” basis. The least favored model (64%) offered the lowest level of consent in which once enrolled in the Precision Medicine Initiative project, researchers approved to participate would have access to enrollees' data without further consent.
In a separate question, 43% of survey participants agreed that if their data was stored without identifiable information, they would be willing to have their “information and research results available on the internet to anyone.”
