Marteau, T.

Michie, S.

English

Michie, S

Marteau, T

King's Research Portal

A personal view on reviewing the psychological consequences of predictive genetic testing for late onset disease - Reply

UCL Discovery

Reply to letter from G Evers-KieboomsThe letter from Evers-Kiebooms responding to our systematic review of thepsychological consequences of predictive genetic testing1 raises four main points.(1) Qualitative data should be included in systematic reviews.(2) Other research is consistent with the findings of the systematic review.(3) It is unethical to carry out experimental studies (randomised controlled trials) ofgenetic counselling.(4) The review includes some unspecified inaccurate reporting.We will discuss these points in the same order:(1) Systematic reviews vary in their inclusion criteria, depending on the researchquestion they are addressing. In our review, we were interested in the outcome oftesting as assessed by standardised, quantitative measures of psychologicalfunctioning. We chose to do this in order to enable comparisons across studies thatvary across several dimensions. Systematic reviews are just that: systematic in theway that they define and pursue their search and integration of the relevantliterature.2 Our search strategy used terms that maximised the chance of identifyingthe studies of interest, and this was confirmed by our validation check.Systematic reviews can only be as good as the research that they review and wedescribed some of these limitations, such as a lack of cognitive and behaviouraloutcomes, and study groups which combined affected with unaffected people (whichwere therefore omitted from our review). Qualitative studies have an importantcontribution to make to understanding psychological impact, and a review of thiswork would be very timely. The large number of reprint requests for this systematicreview suggests a great interest in this area, and our review is only one, and certainlynot definitive, contribution.(2) Other studies of predictive genetic testing exist that did not meet our reviewcriteria have also found that pre-test mood is an important determinant of post-testmood. This does not detract from the importance of any of those findings. Indeed, themore consistency between different studies carried out in different countries ondifferent conditions using different methods, the more robust that finding is.(3) As evidence-based health care is increasingly advocated as the most ethicalapproach, it becomes necessary to define what constitutes evidence. The strongestevidence about causation (eg, that a type of counselling causes a type of outcome)comes from studies that compare models of care in which only the aspects of interestare varied, whilst keeping others the same. This experimental approach is furtherstrengthened by randomising people to these two conditions so that we can beconfident that it is the type of counselling that is bringing about the outcome, not thetype of person who selects the type of counselling. To deprive people of the evidenceon which to base their health care choices is ethically problematic.The studies we envisage would not deprive anyone of counselling. Rather, theymight compare different amounts and types of counselling at different stages of thetesting process to determine the most effective and efficient counselling for differentgroups of counsellees. Current practice of predictive testing counselling varies widely.Without evidence to support any one type of practice, those commissioning care willunderstandably select the cheapest, which may not be the best, option. It is arguablyunethical not to conduct experimental studies that address this issue.(4) Whilst we acknowledge that any published research may include inaccuracies,our review was checked by three researchers and we have received no details aboutinaccuracies within it. We hope that our review, and this subsequent correspondence,will help to stimulate interest in, and study of, this area. Further research, building onwhat we know to date, will help to further our understanding of the psychological andsocial consequences of predictive genetic testing and how to present such testing ina way that maximises well-being and minimises harm.Susan Michie, Theresa MarteauPsychology and Genetics Research Group, Guy's, King's and St Thomas' MedicalSchool, London, UKReferences1 Broadstock M, Michie S, Marteau TM: The psychological consequences ofpredictive genetic testing: a systematic review. Eur J Hum Genet 2000; 8: 731-738.2 Mulrow CD: Rationale for systematic reviews. Br Med J 1994; 309: 597 - 599.

Marteau TM: The psychological consequences of predictive genetic testing: a systematic review.

Rationale for systematic reviews.

Reply to letter from G Evers-Kiebooms: A personal view on reviewing the psychological consequences of predictive genetic testing for late onset disease

Reply to letter from G Evers-Kiebooms: A personal view on reviewing the psychological consequences of predictive genetic testing for late onset disease

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