Genomics and big data — who do we trust?

Genomic data is being produced in ever greater quantities, whether within our health services, in academic research projects, or by the commercial sector. It has been estimated that 60 million people will have had their genome sequenced in healthcare contexts alone, by 2025. But to maximise the value and understanding that we can gain from this information, health research needs this intensely personal data to be shared with others across the world. Interpreting a genomic test result; creating datasets for analysis of diverse populations; and drug development, all require us to share our data. But how willing as a society are we to this? And who do we trust to share it with?

These are some of the questions that Connecting Science’s Society and Ethics Research group have been investigating.

The Your DNA Your Say project is a global online survey, gathering public attitudes to genomic data sharing. It employs nine engaging and accessible films (directed by Tim Pope), which we developed to explain what genomic data sharing is through the eyes of a child called Charlie, before viewers are invited to take an online survey.

The films provide a pivotal bridge to audiences, who may know nothing about genomics, and offer the necessary background information on a potentially unfamiliar topic. Your DNA Your Say aims to understand why some people are willing to donate their genomic and health data, and how they feel about its use. Central to this discussion is trust — as the success and sustainability of genomic medicine and data sharing initiatives relies on individuals trusting the people and organisations to whom they may donate.

Charlie as an academic, a doctor, and a researcher in the pharmaceutical industry.

Charlie as an academic, a doctor, and a researcher in the pharmaceutical industry.

Your DNA Your Say investigated the question of trust, collecting responses from just under 9,000 people across four English-speaking countries — the UK, USA, Canada and Australia. And our initial findings have recently been published in Human Genetics. This research found that levels of trust in the different individuals and groups collecting and sharing genomic and health data vary significantly. While 75% of people said that they would trust their own medical doctor, this dropped to below 40% for other doctors in their country, and only 13% for companies. Our findings reinforce what has previously been found about the importance of trust, particularly the role that personal doctors play as trusted gatekeepers, and the lack of confidence in private companies.

We then looked at the links between trust and characteristics like age, gender and education, as well as people’s familiarity with genetics, and concerns about being identified on the basis of their DNA information. We found that the people who completed the Your DNA Your Say survey could be grouped into three distinct populations. Two larger groups either didn’t trust anyone with their data except for their doctor (and even then, not completely), or discriminated between the different people who might use their data. The final group were those who were trusting of all the people they were asked about. As you might expect, members of this group were most likely to be willing to donate DNA and health information. They were also younger, male, and more likely to have personal experience of genomics, and be from the USA. They were less concerned about their government knowing things about them. Interestingly, they were also more likely to have had a negative experience as a result of sharing any data online, but appeared to be unaffected by this.

“Dr Charlie” sifts through some big data.
“Dr Charlie” sifts through some big data.

These findings show the need to protect those who are willing to allow their data out into the world, to make sure their trust is warranted. However, they also highlight the importance of building trust in genomics beyond this group, and establishing the trustworthiness of big data initiatives. This means considering the perspective of those who are more likely to be concerned about other uses of their data, for example by governments or the police, or who may be excluded from discussions that focus on the perspectives of those who already donate.

Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia. Milne R, Morley KI, Howard H, Niemiec E, Nicol D, Critchley C, Prainsack B, Vears D, Smith J, Steed C, Bevan P, Atutornu J, Farley L, Goodhand P, Thorogood A, Kleiderman E, Middleton A; Participant Values Work Stream of the Global Alliance for Genomics and Health. Hum Genet. 2019 Sep 17. doi: 10.1007/s00439–019–02062–0.

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