Trust is critical to virtually everything we do in life, wherever in the world we are. We trust that when we deposit money into a bank, it will still be there when we want to retrieve it later; and we trust that when we buy a loaf of bread from a shop it will not contain any ingredients that will be harmful to us.
Health research based around genomics and health data has huge potential, but is also a research field where trust is critical. The people who collect, use, and regulate health and genomic data need to be trusted by those who donate both their biological samples and information. Without such trust, this research would quickly become unsustainable and grind to a halt.
Many initiatives have looked to build trust, with a focus on public participants and donors, but what can researchers and research organisations do to make themselves trustworthy?
Our Society and Ethics Research team has been analysing public perceptions of genomic and health data and its use, using a survey-based approach. Working with a number of global collaborators to collect responses from over 35,000 participants, in 15 different languages, the Your DNA, Your Say project has revealed some interesting findings.
The Your DNA, Your Say survey examined what participants thought of different measures that are, or could be, used to demonstrate the trustworthiness of those using donated DNA or other health information. Overall the provision of transparent information about who will benefit from access to this data emerged as the most important measure to increase trustworthiness. This measure was endorsed by more than 50% of participants across 20 of 22 countries, including more than 70% of respondents in Egypt, Argentina, Portugal and Switzerland.
Transparency was vital in this context, encompassing not just how genomic data may generally contribute to future health benefits, but clearly outlining how these benefits will be realised through research, and how the researchers who use this data may benefit themselves.
Overall, offering the option to withdraw information in the future was the second most popular measure in relation to trustworthiness, with the greatest number of respondents endorsing this option in Australia, Canada, Switzerland and the UK.
Interestingly, sanctions for the misuse of data drew the most varied response from global populations, with only 5% endorsing this measure in India, to almost 60% in Japan, where it was the most favoured option.
Although online survey-based studies have a number of limitations, the responses gathered by this project suggest practical findings related to demonstrating the trustworthiness of genomic data research initiatives. They emphasise the importance of transparency about data uses, the goals of data collection, the potential benefits for patients and society, and for the data users themselves.
“ This is a call to action for scientists to be more explicit about how they personally benefit from data in their work, and how they can be rewarded through the receipt of new grants, or via publications based on their research. Transparency around this, as well as benefits to society, should help both individual researchers and research organisations to build their trustworthiness with the public.
Professor Anna Middleton, Head, Society and Ethics Research, Wellcome Connecting Science
The findings also highlight that there is significant global variation in terms of what people feel would demonstrate trustworthiness and increase their trust in the people and organisations collecting and working with genomic data.
“ The differences between the countries in our study highlights the importance of thinking about the specific local social and cultural – as well as legal – contexts in which we collect and work with genomic data.
Dr Richard Milne, Senior Social Scientist, Society and Ethics Research, Wellcome Connecting Science
We hope that the Your DNA, Your Say project will contribute to setting the foundation for how trustworthiness is developed in the genomics and health research sector, supporting collaboration between participants and scientists to deliver equitable benefits.
Read the full publication:
Milne R, et al. Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries. Genome Med. 2021 May 25;13(1):92. doi: 10.1186/s13073-021-00903-0. PMID: 34034801