Ethics of Memory Research: Honouring Privacy (The Neuroethics Blog)
Autobiographical memory (AM) refers to a person’s personal history. This can include childhood experiences, and skills acquired such as driving a car. Our understanding of how AMs are represented in the human brain has massively improved over the past few years using imaging techniques, however, there are ethical considerations when decoding the memory of past events from brain activity. This is because AM studies often collect sensitive information such as personal events.
Privacy
Although we are not yet able to accurately decode personal narratives from brain scans, the possibility of being able to do this in the future raises the issue of privacy. This information could be sensitive and private. It is therefore important to consider ways to mitigate these privacy issues; these could include intentional privacy features in the research technologies used to collect data for example a ‘privacy button’ giving participants greater autonomy over what is shared, ensuring participants understand that their privacy may be at risk before providing consent, and fostering environments in which the volunteers are well-supported emotionally.
Benefits and possibilities
Technologies that can analyse brain scans to outline events and narratives may provide useful tools for patients with neurological disorders and also be useful in legal settings for example to collect memory traces from criminal subjects. But, the vulnerability of participants in research studies leads us to question to what extent this research should be allowed? One patient who trialled brain scanning technologies noted it was easy to forget she was wearing it, and that uncomfortable situations could arise whilst wearing such devices, meaning it was very difficult to achieve full autonomy over the data captured despite measures being in place to ameliorate this issue.
- If volunteers provide consent, should brain scanning in such a way be allowed?
- If there is a situation where a criminal refuses to reveal information, should brain scanning technology to recall events be allowed to gather evidence?
- How could technologies like this be abused?
- In what situations could brain scanning technologies prove useful?
- Should these technologies be available to everyone? Why/Why not?