Last week I posted about a survey of UK citizens regarding collection and use of personal information. Just yesterday I learned about a new survey conducted by the Huntsman Cancer Institute in the United States. Perhaps to nobody’s surprise, Americans seem to be much more privacy-conscious.
The Huntsman survey was more focused than that from the Wellcome Trust — it specifically asked about genetic screening for cancer markers. Some of the numbers were remarkable: slightly more than one third of respondents (34%) said that they would not seek genetic testing for cancer. When asked about the reasons they would avoid testing, 40% cited potentially reduced employment opportunities and 70% (!) cited the potential adverse impact on their insurability. This despite the fact that the law explicitly forbids the types of discrimination that the respondents fear.
I think you can draw a few different types of conclusions from these results, depending upon what you want to see. If you’re not American, you might conclude that the problem lies with the US health insurance system — worries over things like pre-existing conditions just shouldn’t happen. Alternatively, you might conclude that the survey respondents are just not very bright. Or, like Dr Saundra Buys in this video, you may believe that a lack of education about the protections provided by the law is the real culprit.
While I think that all of those conclusions may be justified to some degree, I would like to emphasize a larger point: the majority of Americans really care about the privacy of their genetic data. Regardless of whether they are right or wrong in their reasoning, these fears are preventing them from sharing data with researchers. That’s a shame, because researchers need the data, and arguably, so do they and their families. Dismissing their concerns as uninformed does not solve the problem. What would? Addressing the privacy issue. Giving patients control over the use of their health data. Building systems that allow them to see what is happening with their data.
If we want to take advantage of the explosion of data in healthcare — especially genomic data — we have to move past the view that health and privacy are mutually exclusive.