Mind the Risk

Modern technology rasies questions and concerns when it comes to evaluating and dealing with genetic risk information, both as professional health care givers and as patients.

  • Period: 2014-01-01 – 2019-12-31
  • Budget: 35,899,998 SEK
  • Funder: Riksbankens jubileumsfond
  • Type of funding: Projektbidrag

Managing genetic risk information

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.

There are pressing ethical concerns and a need to improve clinical practice. Mind the Risk is an international, multi-disciplinary research projet that runs over six years. Together, we will provide philosophical and conceptual framework that together with historical and socio-cultural analyses of concerns about risk information, empirical investigations of risk perceptions and preferences and ethical analyses may guide regulation and management of genetic and related risk information in various settings.

The project worked to...

  • Develop a conceptual framework for genetic risk information and management.
  • Assess perceptions and evaluations of genetic risks in different stakeholder groups
  • Assess the ethical, psychological and social implications of the provision of risk information from genetic and related technologies.
  • Explore new forms of communication and information, and develop tools to improve communication skills regarding genetic risk information

Mind the Risk is 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).

The project was coordinated from Uppsala University's Centre for Research Ethics & Bioethics.

People in the project

Bayliss K, Raza K, Simons G, Falahee M, Hanson M, Starling B & Stack RJ, Perceptions of predictive testing for those at risk of developing chronic inflammatory disease: a meta-synthesis of qualitative studies, Journal of Risk Research, 2018;21(2):167-189.

Bouder, F. Towards a concept of genetic risk tolerance: a risk analysis perspective, Journal of Risk Research, 2018;21(2):190-205.

Bunnewell S, Wells I, Zemedikun D, et al. Predictors of perceived risk in first-degree relatives of patients with rheumatoid arthritis. RMD Open 2022;8:e002606. doi:10.1136/ rmdopen-2022-002606

Dalal G, Wright SJ, Vass CM, Davison NJ, Vander Stichele G, Smith CH, Griffiths CEM, Payne K. Patient preferences for stratified medicine in psoriasis: a discrete choice experiment. British Journal of Dermatology 2021; 185(5):978-987

Falahee M, Finckh A, Raza K & Harrison M 2019, 'Preferences of patients and at risk individuals for preventive approaches to rheumatoid arthritis' Clinical Therapeutics, vol. 41, no. 7, pp. 1346-1354. DOI: 10.1016/j.clinthera.2019.04.015

Falahee M, Simons G, Raza K & Stack RJ, Healthcare professionals’ perceptions of risk in the context of genetic testing for the prediction of chronic disease: A qualitative metasynthesis, Journal of Risk Research, 2018;21(2):129-166.

Falahee M., Simons G, Buckley CD, Hansson M., Stack RJ, & Raza Km, Patients' perceptions of their relatives' risk of developing rheumatoid arthritis and of the potential for risk communication, prediction and modulation, Arthritis Care & Research, published online 20 December 2016.

Falahee, M., Raza, K., Schicktanz, S., Wöhlke, S., Schaper, M. Written evidence submitted on behalf of the Mind the Risk Consortium to the Science and Technology Committee on commercial genomic testing (April 2019) https://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/inquiries/parliament-2017/commercial-genomics-17-19/publications/

Georgsson S, Sahlin E, Iwarsson, Nordenskjöld M, Gustavsson P & Iwarsson E. (2016). Knowledge and Attitudes Regarding Non-Invasive Prenatal Testing (NIPT) and Preferences for Risk Information among High School Students in Sweden, Journal of Genetic Counseling, published online 2 August 2016.

Gorini A & Pravettoni G, Why do we pay for information that we won’t use? A cognitive-based explanation for genetic information seeking, European Journal of Human Genetics, published online 9 September 2015

Hansson MG, Bouder F, Howard HC. Genetics and risk – an exploration of conceptual approaches to genetic risk. 2018;21(2):101-108.

Hansson MG, Bouder F, Howard, HC (Eds.), Genetics and Risk: An exploration of conceptual approaches to genetic risk [Special issue], Journal of Risk Research, 2018;21(2)

Hansson M, Holm A, Segerdahl P. Mind the Risk - Den genetiska riskinformaitonens etik för individ och samhälle: Slutrapport från ett forskningsprogram, Makadam Förlag, 2019

Hansson, S. Genetic risk assessment from an ethical point of view. Journal of Risk Research, 2018;21(2):206-221.

Howard HC, Iwarsson E. Mapping Uncertainty in Genomics. Journal of Risk Research, 2018;21(2):129-166.

Inthorn J, Genetic risk information, Journal of Risk Research, 2018;21(2):109-116.

Kalokairinou L, Howard HC, Borry P. Science and Regulation. Changes on the horizon for consumer genomics in the EU. Science 2014;346(6207):296-8.

Kilhlbom U, Hansson MG, Schicktanz S, (eds.), Mind the Risk – Ethical, social and psychological impacts of health risk information in the 21st century, Routledge, 2020

Kihlbom U, Genetic Risk and Value, Journal of Risk Research, published online 1 July 2016.

Leefman J, Schaper M, Schicktanz S, The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature, Front. Sociol., published online 24 January 2017.

Mainetti R, Oliveri S, Cutica I, Gorini A, Gaspardo S, Borghese NA, & Pravettoni G (2018, May). Design, development and usability test of Serious Games related to genetics. In 2018 IEEE 6th International Conference on Serious Games and Applications for Health (SeGAH) (pp. 1-8). IEEE. DOI: 10.1109/SeGAH.2018.8401344

Mainetti, R., Oliveri, S., Gorini, A., Cutica, I., Pravettoni, G., & Borghese, N. A. (2019). Usability Testing of Two Mini-Games and One Serious Game to Educate People About Genetics. Studies in health technology and informatics, 261, 82-87. DOI:10.3233/978-1-61499-975-1-82

Middleton A, Mendes Á, Benjamin CM, Howard, HC. Direct to consumer genetic testing - where and how does genetic counselling fit? Personalized Medicine, published online 11 May 2017.

Mosor E , Stoffer‐Marx M, Steiner G, Raza K, Stack RJ, Simons G, Falahee M, Skingle D, Dobrin M, Schett G, Englbrecht M, Smolen JS, Kjeken I, Hueber AJ and Stamm TA (2019). I would never take preventive medication! Perspectives and information needs of people who underwent predictive tests for rheumatoid arthritis. Arthritis Care and Research. Accepted Author Manuscript. DOI:10.1002/acr.23841

Niemiec E, Borry P, Pinxten W, et al. Content Analysis of Informed Consent for Whole Genome Sequencing Offered by Direct-to-Consumer Genetic Testing Companies. Hum Mutat 2016;37(12):1248-56.

Niemiec E, Howard HC. Ethical issues in consumer genome sequencing: Use of consumers' samples and data. Appl Transl Genom 2016;8:23-30.

Oliveri, S., Ferrari, F., Manfrinati, A., & Pravettoni, G. (2018). A Systematic Review of the Psychological Implications of Genetic Testing: A Comparative Analysis Among Cardiovascular, Neurodegenerative and Cancer Diseases. Frontiers in genetics, 9. DOI: 10.3389/fgene.2018.00624

Oliveri S, Mainetti R, Gorini A, Cutica I, Candiani G, Borghese NA, & Pravettoni G (2018). Serious Games for Improving Genetic Literacy and Genetic Risk Awareness in the General Public: Protocol for a Randomized Controlled Trial. JMIR research protocols, 7(12), e189, DOI: 10.2196/resprot.9288

Oliveri S & Pravettoni G, Capturing how individuals perceive genetic risk information: a phenomenological perspective, Journal of Risk Research, 2018;21(2):259-267.

Oliveri S & Pravettoni G, The disclosure of direct-to-consumer genetic testing: sounding out the psychological perspective of consumers, Biology and Medicine, 2016:8(5).

Oliveri S, Howard HC, Renzi C, Hansson MG & Pravettoni G, Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?, Journal of Medical Genetics, 2016;53(12):798-799.

Oliveri S, Masiero M, Arnaboldi P, Cutica I, Fioretti C, & Pravettoni G, Health Orientation, Knowledge, and Attitudes toward Genetic Testing and Personalized Genomic Services: Preliminary Data from an Italian Sample. BioMed Research International, published online 12 December 2016.

Oliveri S, Pravettoni G, Fioretti C, & Hansson MG, Let the individuals directly concerned decide: a solution to tragic choices in genetic risk information, Public Health Genomics, 2016;19(5):307-313.

Oliveri S, Renzi C, & Pravettoni G, Toward an in-depth profiling of DTC users, Clinical genetics, 2015;88(5):505-506.

Oliveri S, Renzi C, Masiero M, & Pravettoni G, Living at risk: factors that affect the experience of direct-to-consumer genetic testing, Mayo Clin Proc, October 2015;90(10):1323-1326.

Oliveri S, Marton G, Vergani L, Cutica I, Gorini A, Spinella F, Pravettoni G. Genetic testing consumers in Italy: a snapshot of socio-demographic profile, health-related habits, motivations and decision purposes. Front Public Health 2020;8:511.

Oliveri S, Ongaro G, Durosini I, Curigliano G, Pravettoni G. Breast Implant–Associated Anaplastic Large Cell Lymphoma: emotional impact and guidelines for psychological support. Breast Cancer Res Treat 2020 May;181(1):221224.

Perry J, Wöhlke S, Hessling AC, Schicktanz S, Why take part in personalised cancer research? Patients’ genetic misconception, genetic responsibility and incomprehension of stratification—an empirical-ethical examination, European Journal of Cancer Care Online August 10 2016, 10.1111/ecc.12563.

Rigby D, Vass CM, Payne K. Opening the 'Black Box': an overview of methods to investigate decision-making in choice-based surveys. The Patient. 2020 Feb;13(1):31-41.

Sahlin, E., Nordenskjöld, M., Gustavsson, P.,Wincent, J., Georgsson, S,† & Erik Iwarsson† †) (2016). † These authors contributed equally as senior authors to this work, Positive attitudes towards non-invasive prenatal testing (NIPT) in a Swedish cohort of 1,003 pregnant women, PLOS ONE, published online 19 May 2016.

Schaper M, Hansen S, Schicktanz S, Überreden für die gute Sache? Techniken öffentlicher Gesundheitskommunikationen und ihre ethischen Implikationen. Ethik in der Medizin, 2018, 31(1): 23-44. DOI: 10.1007/s00481-018-0507-7

Schaper M, Wöhlke S, Schicktanz S, “I would rather have it done by a doctor”—laypeople’s perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implications, Medicine, Health Care and Philosophy 2018, DOI: 10.1007/s11019-018-9837-y

Schaper M, Schicktanz S, Medicine, Market and Communication: Ethical Considerations in Regard to Persuasive Communication in Direct-to-Consumer Genetic Testing Services. BMC Medical Ethics, 5 June 2018.

Schicktanz S, Genetic risk and responsibility: reflections on a complex relationship, Journal of Risk Research, 2016:1-23.

Singhal, J., Wells, I., Simons, G. et al. Public perceptions of predictive testing for rheumatoid arthritis compared to breast cancer and early-onset Alzheimer’s disease: a qualitative study. BMC Rheumatol 6, 14 (2022). DOI: 10.1186/s41927-021-00244-w

Simons G, Stack RJ, Stoffer-Marx M, Englbrecht M, Mosor E, Buckley CD, Kumar K, Hansson M, Hueber A, Stamm T, Falahee M, Raza K. Perceptions of first-degree relatives of patients with rheumatoid arthritis about lifestyle modifications and pharmacological interventions to reduce the risk of rheumatoid arthritis development: a qualitative interview study. BMC Rheumatology. 2018;2:31. DOI: 10.1186/s41927-018-0038-3

Stack R, Stoffer M, Englbrecht M, Mosor E, Falahee M, Simons G, Smolen J, Schett G, Buckley C, Kumar K, Hansson M, Hueber A, Stamm T and Raza K, Perceptions of first degree relatives of patients with rheumatoid arthritis about their personal risk of, and predictive testing for, rheumatoid arthritis: a cross-European qualitative study, BMJ Open, 2016;6(6): e010555

Vass CM, Barton A, Payne K. Towards Personalising the Use of Biologics in Rheumatoid Arthritis: A Discrete Choice Experiment. Patient 2022; 15(1):109-119

Vass CM, Davison NJ, Stichele GV, Payne K. A picture is worth a thousand words: the role of survey training materials in stated-preference studies. The Patient 2020; 13:31-41

Vass CM, Georgsson S, Ulph F, Payne K. Preferences for aspects of antenatal and newborn screening: a systematic review. BMC Pregnancy and Childbirth 2019; 19: 131

Vass C, Gray E, Payne K. Discrete choice experiments of pharmacy services: a systematic review. Int J Clin Pharm 2016;38(3):620-30.

Vass C, Payne K. Using Discrete Choice Experiments to Inform the Benefit-Risk Assessment of Medicines: Are We Ready Yet? Pharmacoeconomics, 2017;35(9):859–866.

Vass CM, Rigby D & Payne K. “I was trying to do the maths”: exploring the impact of risk communication in discrete choice experiments. The Patient 2019; 12:113–123

Vass C, Rigby D, Payne K. . The Role of Qualitative Research Methods in Discrete Choice Experiments: A Systematic Review and Survey to Authors. Medical Decision Making 2017;37(3):298-313.

Vass CM, Rigby D, Stewart A, Tate K & Payne K. An Exploratory Application of Eye-Tracking Methods in a Discrete Choice Experiment. Medical Decision Making 2018; 38(6):658-672

Vass C, Wright SJ, Burton M & Payne K. Scale Heterogeneity in Healthcare Discrete Choice Experiments: A Primer. The Patient 2018; 11(2):167-173

Viberg Johansson J, Segerdahl P, Höstery Ugander U, Hansson MG, Langenskiöld S, Making sense of genetic risk: a qualitative focus-group study of healthy participants in genomic research, Patient Education and counseling 2017, DOI: 10.1016/j.pec.2017.09.009

Viberg J, Segerdahl P, Langenskiöld S, Hansson MG, Freedom of choice about incidental findings can frustrate participants’ true preferences, Bioethics 2015, online: DOI: 10.1111/bioe.12160

Wells I, Zemedikun DT, Simons G, Stack RJ, Mallen CD, Raza K, Falahee M. Predictors of interest in predictive testing for rheumatoid arthritis among first degree relatives of rheumatoid arthritis patients. Rheumatology (Oxford). 2022 Aug 3;61(8):3223-3233. doi: 10.1093/rheumatology/keab890.

Wright SJ, Vass CM, Ulph F, Payne K. Understanding the impact of different modes of information provision on preferences for a Newborn Bloodspot Screening Programme in the UK. Medical Decision Making Policy & Practice 2024; 4;9(1):23814683241232935. doi: 10.1177/23814683241232935

Wright SJ, Dalal G, Vass CM, Georgsson S, Payne K. How do women want to receive information about NIPT– evidence from a discrete choice experiment. Prenatal Diagnosis 2022; 42(11):1377-1389

Wright SJ, Vass CM, Sim G, Burton M, Fiebig DG, Payne K. Accounting for scale heterogeneity in healthcare-related discrete choice experiments when comparing stated preferences: A Systematic Review. The Patient 2018; 11(5): 475–488

Wöhlke S, Perry J & Schicktanz S, Taking it Personally: Patients’ Perspectives on Personalised Medicine and its Ethical Relevance, In: Jochen Vollmann, Verena Sandow, Sebastian Wäscher, & Jan Schildmann (Eds.): Personalised Medicine: Ethical, Medical, Economic and Legal Critical Perspectives, ASHGATE, 2015 129-149. 2

Wöhlke, S., Perry, J., Schicktanz, S., Physicians’ communication patterns for motivating rectal cancer patients to biomarker research: Empirical insights and ethical issues. Clinical Ethics, 0(0) 1–14, 2018 DOI: 10.1177/1477750918779304

Wöhlke, S., Schaper, M., Schicktanz, S. (2019): How Uncertainty Influences Lay People’s Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication, Front. Genet., DOI: 10.3389/fgene.2019.00380

Wöhlke S, Schaper M, Oliveri S, Cutica I, Spinella F, Steinberger D, Pravettoni G, Schicktanz S. German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192), Front. Genet., 19 March 2020

Wöhlke S, Perry J, Responsibility in dealing with genetic risk information, Social Theory & Health. 2021;19