In Researchers, We Trust . . . With Our Data

Brian Lee-Archer

A medical researcher approaches you and says words to the effect, “My team at the XYZ clinic is working on a cure for cancers that affect young children. We are close to a breakthrough. We are seeking volunteers to participate in the next phase of the research, which will involve gathering detailed medical information, including a DNA sample, from you and all your family members. It doesn’t matter whether your family has or hasn’t been touched by a childhood cancer – it is the randomness of the volunteer sample that matters.” How would you respond?

For many people, the opportunity to participate in a research program that may make a major breakthrough in childhood cancer research will far outweigh any concerns they have over how the data they provide will be used by the research team. Does anyone think about what would happen if the researchers turned over the medical information, in particular the DNA sample, to an insurance company or to law enforcement? Do we think about how secure the research data is from a hacking attack? Of course this could happen, but we generally  trust the researchers, in particular because in this scenario they said they were from the well renowned XYZ clinic. Their only interest is to save children’s lives, and why should we fear the information being used for a purpose other than for what it was collected for?

Let’s replay the same scenario, but this time our researchers are examining the social determinants of children at risk of abuse by family members. The researchers are from a well-known and highly respected university and their research project is funded by a government grant. They believe a breakthrough is close in being able to predict, with a very high degree of certainty, children at risk of serious harm based on an analysis of social factors affecting the family unit. They are seeking volunteers to participate in the next phase of the research, which will involve gathering detailed social and medical information from all members of a family. The randomness of the survey volunteers is a key attribute of the research method.

So what risks will our prospective volunteers be thinking about in terms of handing over their personal information to the researchers? I expect many would have serious reservations, in particular those who may have never had any contact with children at risk of serious harm or the child protection system. The aim of the researchers is to save the lives of children. Is this any different from the XYZ clinic seeking a breakthrough in childhood cancer?

There is an argument that says these two scenarios are like comparing apples and oranges. But when looked at in terms of the desired outcome – saving the lives of children – are they really that different? At the heart of these scenarios lies the question of what information about ourselves are we prepared to share for the common good? And if we agree we can or should share this information, then who are we sharing it with, and can they be trusted to only use if for the purpose it was intended for?

Most people are likely to agree this type of research is necessary if we are to solve the great medical challenges facing our societies. Medical science is advancing at great speed, especially since 2003, when researchers announced they had sequenced the entire genetic code of a human being, to an accuracy of 99.999%.

What we find hard to agree on is what level of research is appropriate with respect to addressing the great social challenges of our time. Information technology is providing the tools and raw data to enable new types of deep research. However, there are ethical, moral, and privacy concerns on what and when personal data can be collected and how it can be used. The medical research fraternity has been very successful at keeping the focus on the desired outcomes, such as curing cancer, which in turn draws in public support to provide the raw (and at times very personal) information required to drive the research effort. In general, we place great trust in these institutions and how they use the information we give them. In the social field, this same level of trust does not seem to exist. Technology is moving so fast in terms of how data is collected and used, often without our knowledge, that instead of building trust, we seem to be sowing the seeds of fear, uncertainty, and doubt.

We need to take inspiration from the medical research fraternity and follow their lead on building the value proposition for research by focusing on the societal benefits. Are we certain medical researchers have our personal information fully protected? We don’t really know, but we trust that they do. Many of us will be fortunate enough to not be affected by childhood cancers, but that doesn’t hold us back from contributing to finding a cure. If you get asked to provide one of those simple DNA swab samples in the name of medical research, you may want to stand back and think about other ways your personal information could contribute to saving lives.

A focus on developing trust in our public institutions in how and why they collect personal information (including data linkage) is essential for determining the root causes of social problems. Once root causes are known, the research outcomes can be applied within preventative intervention strategies. Without the appropriate legal and privacy frameworks aligned to prevailing social attitudes to enable research using a wide variety of data sources, public institutions will continue to lag behind the medical research fraternity in finding solutions to the great social challenges of our times.

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Brian Lee-Archer

About Brian Lee-Archer

Brian Lee-Archer is director of the SAP Institute for Digital Government Global (SIDG). Launched in 2015, SIDG is a global think tank that aims to create value for government by leveraging digital capability to meet the needs of citizens and consumers of government services. In collaboration with government agencies, universities and partner organizations, SIDG facilitates innovation through digital technology for deeper policy insight and improved service delivery.