A blog from the Centre for Research Ethics & Bioethics (CRB)

Author: jennifervibergjohansson

Research for responsible governance of our health data

Do you use your smartphone to collect and analyse your performance at the gym? This is one example of how new health-related technologies are being integrated into our lives. This development leads to a growing need to collect, use and share health data electronically. Healthcare, medical research, as well as technological and pharmaceutical companies are increasingly dependent on collecting and sharing electronic health data, to develop healthcare and new medical and technical products.

This trend towards more and more sharing of personal health information raises several privacy issues. Previous studies suggest that people are willing to share their health information if the overall purpose is improved health. However, they are less willing to share their information with commercial enterprises and insurance companies, whose purposes may be unclear or do not meet people’s expectations. It is therefore important to investigate how individuals’ perceptions and attitudes change depending on the context in which their health data is used, what type of information is collected and which control mechanisms are in place to govern data sharing. In addition, there is a difference between what people say is important and what is revealed in their actual behaviour. In surveys, individuals often indicate that they value their personal information. At the same time, individuals share their personal information online despite little or no benefit to them or society.

Do you recognise yourself, do you just click on the “I agree” button when installing a health app that you want to use? This behaviour may at first glance suggest that people do not value their personal information very much. Is that a correct conclusion? Previous studies may not have taken into account the complexity of decisions about integrity where context-specific factors play a major role. For example, people may value sharing health data via a physical activity app on the phone differently. We have therefore chosen to conduct a study that uses a sophisticated multi-method approach that takes context-specific factors into account. It is an advantage in cybersecurity and privacy research, we believe, to combine qualitative methods with a quantitative stated preference method, such a discrete choice experiment (DCE). Such a mixed method approach can contribute to ethically improved practices and governance mechanisms in the digital world, where people’s health data are shared for multiple purposes.

You can read more about our research if you visit the website of our research team. Currently, we are analysing survey data from 2,000 participants from Sweden, Norway, Iceland, and the UK. The research group has expertise in law, philosophy, ethics and social sciences. On this broad basis, we  explore people’s expectations and preferences, while identifying possible gaps within the ethical and legal frameworks. In this way, we want to contribute to making the growing use and sharing of electronic health data ethically informed, socially acceptable and in line with people’s expectations.  

Written by…

Jennifer Viberg Johansson, Postdoc researcher at the Centre for Research Ethics & Bioethics, working in the projects Governance of health data in cyberspace and PREFER.

This post in Swedish

Part of international collaborations

Letting people choose isn’t always the same as respecting them

Jennifer Viberg, PhD Student, Centre for Research Ethics & Bioethics (CRB)Sequencing the entire genome is cheaper and faster than ever. But when researchers look at people’s genetic code, they also find unexpected information in the process. Shouldn’t research participants have access to this incidental information? Especially if it is important information that could save a life if there is treatment to offer?

The personal benefits of knowing genetic information can vary from individual to individual. For one person, knowledge might just cause anxiety. For another, genetic risk information could create a sense of control in life. Since different people have different experiences, it could seem tempting to leave it for them to decide for themselves whether they want the information or not.

Offering participants in genetic research a choice to know or not to know is becoming more common. Another reason for giving a “freedom of choice” has to do with respecting people by allowing them to make choices in matters that concern them. By letting the participant choose, you acknowledge that he or she is a person with an ability to make his or her own choices.

But when researchers hand over the decision to participants they also transfer responsibility: A responsibility that could have consequences that we cannot determine today. I recently wrote an article together with colleagues at CRB about this in Bioethics. We argue that this freedom of choice could be problematic.

Looking at previous psychological research on how people respond to probabilities, it becomes clear that what they choose depends on how the choice situation is presented. People choose the “safe” outcome before taking a risk in cases where the outcome is phrased in a positive way. But they are more prone to taking a risk when the result is phrased in a negative way, despite the fact that the outcome is identical. If a participant is asked if he or she wants information that could save their life, there is a risk that they could be steered to answering “yes” without considering other important aspects, such as having to live with anxiety or subjecting themselves to medical procedures that might be unnecessary.

The benefit of incidental findings for individual participants is hard to estimate. Even for experienced and knowledgeable genetic researchers. If we know how difficult the choice situations are, even for them, and if we know how psychological processes probably will steer the participants’ choices, then it seems that it is hardly respectful to give the participants this choice.

There are good intentions behind giving participants freedom to choose, but it isn’t respectful if we can predict that the choices won’t be free and well grounded.

If you want to learn more, you find further reading on CRB’s web, and here is a link to our article: Freedom of choice about incidental findings can frustrate participants’ true preferences

Jennifer Viberg

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