Ethical, social and psychological impacts of genomic risk communication


Biomedical research is constantly finding new ways to detect genetic variation and link the findings to diseases and to the effects of various drug treatments. The amount of information that it produces keeps increasing, but we are still not sure how to manage it. Researchers who took part in the six-year Mind the Risk project coordinated from the Centre for Research Ethics & Bioethics have published their findings in an anthology focussed on genetic risk communication. 

Modern technology gives us increasing possibilities to diagnose and predict disease using DNA-analysis of tissue, cell-lines and blood samples. This makes individualized treatment and prevention of disease easier, but it also raises questions and concerns when it comes to evaluating and dealing with genetic risk information, both as professional health care givers and as patients.

“We wanted to examine the introduction of new types of health risk information based on faster, cheaper and larger sets of genetic or genomic analysis. Combining our findings from Mind the Risk in one place, and continuing to explore the unsolved ethical and social questions around sharing this data seemed appropriate,” says Ulrik Kihlbom, one of the editors of the anthology.

In the anthology, the authors explore issues like what is best practice in risk communication, what are the normative presumptions and ethical consequences of increasing individual’s responsibility for their own health, and how to deal with the gap between the knowledge of risk and the lack of therapeutic options available for complex diseases (like dementia and some types of cancer).

Twenty experts in the field examine these issues from a liberal bioethics perspective, advocating for contextual and culture-sensitive ethical discussions. The book is published on 16 November 2020. Keep an eye out for it on Routledge’s website!

About Mind the Risk

Mind the Risk was a six-year international network collaboration with scientists and researchers from Uppsala, Birmingham, Göttingen, Manchester, Milano and Stockholm funded by Riksbankens Jubileumsfond (The Swedish Foundation for Humanities and Social Sciences)

By Anna Holm

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Last modified: 2022-01-10