Abstract
For nearly two decades, prevention, and especially the indicated prevention of severe mental disorders has increasingly become a target of psychiatric research and, consequently, of ethical debates. The main focus and critic of the latter is on the accuracy of prediction and the safety of treatment, though concerns and arguments vary with the different characteristics of the considered disorder. Taking endogenous psychoses, Alzheimer’s disease (AD) and Huntington’s disease (HD) as examples, costs and benefits of an early detection, of an early intervention and of prevention research in the prodromal or premorbid phase, though heavily intertwined, will be examined with special emphasis on aspects of patient’s autonomy including considerations on informed consent and the ethical principles of nonmaleficence and beneficence.
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- 1.
- 2.
In ICD-10 (WHO 1991) and DSM-IV (APA; American Psychiatric Association 1994), a prodrome is explicitly acknowledged for the majority of first-episode schizophrenia patients and is considered as part of both the time and the disability criterion, but, for its assumed unspecific nature, not as a diagnostic criterion per se.
- 3.
Concerns about confidentiality to protect persons identified as being at-risk of a serious (neuropsychiatric) disorder from insurance discrimination are highly dependent in their relevance from the national health insurance system and a particular concern in countries with mainly private insurances such as the US (Corcoran et al. 2005).
- 4.
A patient’s competence to consent might already be compromised by the evolving neuropsychiatric disorder or s/he might still be a minor (see related discussion in Section 16.4).
- 5.
For example, participation in breast cancer screening will lead to a 25% RRR of death (i.e., to a reduction from four to three cases out of 1,000 women of the general population over the age of 35), while the ARR is only 0.1% and, consequently, the NNT to prevent one case of death is 1,000 (Strech 2005). For comparison at a 5%-rate of false-positive predictions, the ‘number needed to harm’ (Strech 2005, p. 106) would only be 50, i.e., 50 of 1,000 women would unnecessarily be confronted with a positive test result and the related potential negative consequences.
- 6.
Not meeting the WHO’s criteria of ‘health’ cannot be equalled with being ‘ill’ (Helmchen 2003, 2005b). Even more than in somatic medicine, in psychiatry, the lack of clear-cut somatic/genetic diagnostic criteria has led to ongoing debates about the concept or comprehension of ‘psychiatric illness’ and about the very existence of psychiatric diseases (Helmchen 2003). Therein, the traditional, aetiopathologically oriented concept of illness has increasingly been complemented by an intervention oriented concept of disorder in that ‘disablement’ including the dimensions of impairment, disability and handicap is given more emphasis (Helmchen 2003).
- 7.
Although the ability to consent should always be assessed in each patient, reliable guidelines or instruments for the assessment of competence are still wanting (see also Chapter 14).
- 8.
For the dependence of research on moral and social attitudes and national legal regulations, the general framework in that EDI research is conducted varies across countries. A description of this intertwinement of research, societal attitudes and medical laws in the Netherlands is given by Evert van Leeuwen (2001).
- 9.
In case of EI studies, this should also include information on NNT and/or ARR (see above) and should ensure that a ‘therapeutic misconception’ (Appelbaum et al. 1982), i.e., the perception of research as personalized care, is avoided.
- 10.
The German central ethics committee (Zentrale Ethikkommission bei der Bundesärztekammer 2004) stated that the use of pharmaceuticals of insufficiently known age-specific efficacy and safety in minors was surely dubious from an ethical point of view, yet that this was rather common practice in their pharmacological treatment due to lack of research in this age-group. While posing additional safety and protection requirements for this group, the committee even voted for studies of mainly group-specific benefit if no alternative to such a trial would exist. The view that, under some conditions, a study posing a minor increase (that does not exceed the degree of risks ordinarily encountered in daily life) over minimal risk while offering no prospect of direct medical benefit is acceptable, is also shared by the US Common Rule (DeGrazia 2001).
Abbreviations
- AD:
-
Alzheimer’s Disease
- APA:
-
American Psychiatric Association
- ARR:
-
Absolute Risk Reduction
- DSM:
-
Diagnostic and Statistical Manual of Mental Disorders
- ED:
-
Early Detection
- EDI:
-
Early Detection and Intervention
- EI:
-
Early Intervention
- FTLD:
-
Frontotemporal Lobal Degeneration
- HD:
-
Huntington’s Disease
- ICD:
-
International Classification of Diseases
- NNT:
-
Number Needed to Treat
- RRR:
-
Relative Risk Reduction
- WHO:
-
World Health Organization
- YLD:
-
Years Lived with Disability
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Klosterkötter, J., Schultze-Lutter, F. (2010). Prevention and Early Treatment. In: Helmchen, H., Sartorius, N. (eds) Ethics in Psychiatry. International Library of Ethics, Law, and the New Medicine, vol 45. Springer, Dordrecht. https://doi.org/10.1007/978-90-481-8721-8_16
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