Would you or Would you Not?

(June 7th, 2016) How does the public really feel about data privacy, especially when it’s about their medical data? To find out, the Wellcome Trust is currently conducting a survey.

Have you ever thought about how the public would like its medical data to be handled? Would it be ok for them if medical researchers use it to develop a new treatment for cancer? How about a commercial biotech company to develop a new product to increase their profits? These are some of the questions a new project, launched recently by the Global Alliance for Genomics and Health (GA4GH, Canada) and the Wellcome Trust (UK), is asking. “We all have an online footprint already, and we want to know if, by adding genomic and phenotypic information into that online footprint, whether people are worried about this,” explains project leader Anna Middleton, based at the Wellcome Genome Campus. “Or perhaps they are more worried about their online banking details being hacked than they are about their genotype being revealed? We aim to find out”.

Research based on medical data, which includes information relating to health as well as DNA records, has tremendous potential. However, to be useful, all this information needs to be included in massive databases to allow comparisons including millions of individuals around the world. “The key is that big data is needed in order to make sense of genomics and that involves individuals agreeing to donate their data for an as yet, unknown future purpose”, says Middleton.

To address these issues, the GA4GH Participant Values Task Team has recently designed a new worldwide project, called “Your DNA, Your Say”. The survey includes a series of short films describing multiple scenarios in terms of when, how and by whom medical data can be used. These can be quite complex situations, and the team considered different options to avoid dull and uninspiring text-based surveys. “For a long time, the group discussed how we could convey a lot of information to users, without them dropping off the survey. We found films are a mildly entertaining and relatively short way of conveying a lot of information”, says Barbara Prainsack, based at King’s College London, who was involved in the design of this study. “They are also specifically designed so they are easily translatable into other languages”, adds Middleton.

For each scenario, a short video is accompanied by multiple-choice questions, where participants can indicate whether they would donate their medical information in that particular situation. “We hope [the questions] are interesting to answer and make people think about things they haven’t thought about before”, says Prainsack. “One thing that we know is that, for many people, it matters for what purpose the information is used. Lots of people say it can be used to develop new treatments, but not to make a profit. We know these kinds of trends exist, but we don’t know why this is the case”. According to the researcher, this information will be crucial to develop better policies, based on what people actually want.

The survey is open to everyone, irrespective of age, location, education and even interest in medical issues. Actually, explains Prainsack, “we specifically encourage people who not necessarily have an interest in this. People who are already working in the field know what they want”. There are also no country restrictions, and participants can come from anywhere in the world. At the moment, the questions are only available in English, but translations to Japanese, Polish, Swedish, French, Arabic and Russian should be out by the end of this year.

As a final note, it’s important to emphasise this is a purely research initiative organised by a not-for profit organisation. Their main aim is to help policy makers develop better policies based on the public’s views on this matter. The survey is open now and can be filled in by anybody.

Alex Reis

Picture: www.publicdomainpictures.net/kai Stachowiak

Last Changes: 07.29.2016