Re: “Informed choice” in a time of too much medicine—no panacea for ethical difficulties
The article by Johansson et al. (1) discusses informed choice in the context of the medicalization of society. The authors discuss the role of emotions, cultural influences, and guilty feelings when making a health choice, underlying the common beliefs that “more is better”, “prevention is better than cure”, and the harm that can be done by information about a disease when a person is asymptomatic. The cost of preventive medicine instead of curing people who are already ill is noted.
We agree with the call for reflection about the possible negative effects of informed choice, considering the pervasive environment in which medicine is supposed to fix all (health) problems. Since the landscape is permeated by the many interests at stake, some initiatives support the production of relevant information from valuable research, and of independent information involving patients and the public, fostering a different view of medicine. (2-4)
In line with the analysis by Johansson et al. and promoting a broader role of society in public health decisions, (5-6) citizen juries could be one way to guide screening policy, particularly on cancer. (7) People are consulted to express their opinions and deliberate about the pros and cons of screenings, before single citizens find themselves in a situation with no way of avoiding making a choice. (1)
Informed choice would be made first from a public perspective, engaging the public before implementing an intervention. In line with this idea, the Laboratory of consumer involvement at the IRCCS Mario Negri Institute organized four citizen juries. One on PSA as an individual screening test for prostate cancer in men, (8) and three on carrier screening for cystic fibrosis. (9) Like in one organized in Australia, the jury was not in favor of PSA screening, (8, 10) a finding outside the “more is better” framework. The juries on cystic fibrosis carrier screening, however, were in favor of the screening, underlying the value of letting people make informed reproductive choices. These findings were not expected, in one sense, and suggest that the engagement of the public, being informed in a balanced and transparent way, could lead to different views from the mainstream.
On the other hand, when mass screening programs are actually offered, ethical concerns are a particular issue, especially when the balance between advantages and disadvantages is widely debated, such as for breast cancer screening. (11) Unbiased, complete information should also cover the controversies, (12) so we are developing a decision aid that deals with overdiagnosis and controversies, that will be tested in a randomized trial within a project funded by The Italian Association for Cancer Research. (13)
Finally, we strongly agree with the need to promote a culture that critically appraises the process and interests defining the borders of disease and normality, moving beyond the narrow landscape of medicine when dealing with life and health.
1. Johansson M, Jørgensen KJ, Getz L, Moynihan R. "Informed choice" in a time of too much medicine-no panacea for ethical difficulties. BMJ. 2016;353:i2230. doi: 10.1136/bmj.i2230.
2. Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gülmezoglu AM, Howells DW, Ioannidis JP, Oliver S. How to increase value and reduce waste when research priorities are set.
Lancet 2014;383(9912):156-65. doi: 10.1016/S0140-6736(13)62229-1.
3. The International Patient Decision Aid Standards (IPDAS) Collaboration. Available at: http://ipdas.ohri.ca/. Accessed 7 June 2016.
4. Colombo C, Filippini G, Synnot A, Hill S, Guglielmino R, Traversa S, Confalonieri P, Mosconi P, Tramacere I. Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project. BMC Neurol 2016;16(1):30. doi: 10.1186/s12883-016-0552-0.
5. Colombo C, Liberati A, Satolli R, Mosconi P. Citizens’ juries in health care BMJ 2010;341:c5141
6. Moynihan R. Who benefits from treating prehypertension? BMJ 2010;341:c4442.
7. Rychetnik L, Carter SM, Abelson J, Thornton H, Barratt A, Entwistle VA, Mackenzie G, Salkeld G, Glasziou P. Enhancing Citizen Engagement in Cancer Screening Through Deliberative Democracy. J Natl Cancer Inst 2013;105(6):380-6. doi: 10.1093/jnci/djs649.
8. Mosconi P, Colombo C, Satolli R, Carzaniga S, Steering Commitee and the Scientific Committee. Involving a citizens' jury in decisions on individual screening for prostate cancer. PLoS One 2016; 11 : e0143176.
9. Mosconi P, Castellani C, Villani W, Satolli R. Cystic fibrosis: to screen or not to screen? Involving a Citizens’ jury in decisions on screening carrier. Health Expect 2014;18:1956-1967.
10. Rychetnik L, Doust J, Thomas R, Gardiner R, Mackenzie G, Glasziou P. A Community Jury on PSA screening: what do well-informed men want the government to do about prostate cancer screening--a qualitative analysis. BMJ Open 2014;4(4):e004682. doi: 10.1136/bmjopen-2013-004682.
11. Hersch J, Barratt A, Jansen J, Irwig L, McGeechan K, Jacklyn G, Thornton H, Dhillon H, Houssami N, McCaffery K. Use of a decision aid including information on overdetection to support informed choice about breast cancer screening: a randomised controlled trial. Lancet 2015; 385(9978):1642-52. doi: 10.1016/S0140-6736(15)60123-4.
12. Forbes LJ1, Ramirez AJ2; Expert group on Information about Breast Screening. Offering informed choice about breast screening. J Med Screen. 2014;21(4):194-200. doi: 10.1177/0969141314555350.
13. Summary of the project available at: http://www.partecipasalute.it/cms/files/AIRC_2015%20Abstract(1).pdf
Competing interests: No competing interests