Survey Launch on Public Attitudes Toward Genomic Data Sharing

By Allison Proffitt

June 13, 2016 | The Global Alliance for Genomics and Health (GA4GH) and the Wellcome Genome Campus have together launched a video series and survey to explore public attitudes toward genetic data handling.

The project—Your DNA, Your Say—comprises nine short films to educate viewers on what genomic data is, and how it can be used, accessed, and shared by researchers. After each video, viewers are invited to answer a series of survey questions about their own views of genomic data sharing.

“Genomic data sharing needs to happen on a massive scale in order to realize the potential of genomics, but in order to do that data sharing you need people to donate their data,” explains Anna Middleton, principle social scientist at the Wellcome Genome Campus, who is leading the project.

“There’s very little research out there that has actually gathered people’s views toward this, and what they think about the sharing process, what they would like to be made available, for what purposes, how connected they’d like to be to the process. And so we decided to… gather attitudes, values, and beliefs toward this whole area of genomic data sharing.”

Middleton’s son, Charlie, is the star of the films, providing voice overs and acting out the role of individual, doctor, non-profit researcher, and for-profit researcher. He explores “DNA information” (toy letters) and stores it alongside medical information (an Operation game) in a secure database (a bookshelf crammed with labeled boxes). He explains how some databases are secure and need a key to open; others allow more free access. He plays the role of Sherlock Holmes and connects a publication on a rare heart defect to a runner in Cambridge, UK.

The short films are meant to be educational, engaging, and accessible, Middleton said. “Most people in the public have no clue what genomics is, no concept of the whole industry, really. We had to pitch the films and the survey in a way that we could relate to people. We used language that they could understand, and language that would be easily translatable.”

For instance, “we know that the word ‘genomics’ isn’t something that people have heard of… but they have heard of DNA and they are familiar with the concept of a gene. So instead of using ‘genomics’ in the survey, we’ve used ‘DNA information’ instead. Instead of using ‘phenotype’, we’ve used ‘medical information’,” Middleton said.  

Questions guide the survey-taker through their views on these types of data and how they should be used. The survey begins by asking what potentially sensitive information do respondents already store online. Holiday photos? Banking details? Medical information? The survey guides respondents through different scenarios for how genomic data might be used: by non-profit researchers working on new medications; by for-profit researchers working on medications; or by doctors looking to diagnose a patient. Under which circumstances a user would be willing to donate his or her data? What would data donors want to know about the database? How often would they want to be notified of changes? What are their concerns? What are the worst case scenarios? How do they define trust?

They are weighty questions, but the video format keeps them easy to process. And along the way, Charlie types on a keyboard, collects puzzle pieces, dances, and searches for information with a magnifying glass and a deerstalker. (“He was a bit wild,” Middleton laughed.)

“What we’ve tried to do is give people enough background information to answer the questions. So they are going to be as informed as they can be at the point when they answer the questions,” Middleton said.

The survey opened in late May, and has already had 8,000 website hits, though Middleton hasn’t counted the completed surveys or looked into the findings yet. Her hope is that the survey goes viral and is filled out by all kinds of people: those who are very informed about genomics’ risks and possibilities, as well as people who have never considered these questions before. It’s important, she said, that both the general public and experts weigh in on these questions.

“The idea in gathering any empirical data like this is to feed into policy, and what that policy might look like will be guided by what the data shows,” Middleton said. “There’s a definite intention by the Global Alliance to use the data to inform what they do. It might change the way consent forms look; it might change the level of security measures over things. It might mean we want to push toward more regulation for data sharing, or it might mean we need to relax data sharing policies.”

Middleton is anxious for the genomics community to get involved. She encouraged everyone to take and share the survey. The videos are available for any group to use for education—with or without the survey. Middleton has plans to translate the survey and videos into Russian, French, and Polish, with Swedish, Japanese, and Arabic soon to follow. Any other groups who are willing to take on the translation are welcome, and would have access to the findings in that language.

She believes the survey will be extremely useful, but cautions that it’s not meant to reveal a final answer. “It’s going to by no means be the world take on attitudes! It should be taken in context of other research—other quantitative research and other qualitative research.”