Ethical aspects of clinical neuroscience

Abstract

This paper deals with ethical implications of neuroscientific research on patients as well as with the application of its results in diagnosis and treatment for brain diseases, in which a considerable demand for research exists due to their high frequency, long duration, disabling consequences, and unsatisfactory or nonexistent treatment possibilities. Such indispensable research on patients calls forth the basic ethical tension between respect of autonomy and dignity of the sick individual (as well as the avoidance of somatic and psychic risks and burdens) and the ethically justified demand for flawless research in recognizing, preventing, reducing, or eliminating disability and suffering caused by disease. The demand for research today also results from the increasing orientation of insurance companies towards scientifically proven evidence of the efficacy and safety of medical interventions: "evidence-based medicine." This is illustrated by 3 examples: (1) use of fetal brain tissue/cells from planned abortions in patients in therapy-resistant final stages of Parkinson's disease and the effects of neurotransplantation on the recipients, (2) research with demented patients incompetent to give informed consent, and (3) predictive (presymptomatic, prenatal) testing in the genetic counseling of individuals from families with Huntington's chorea. We conclude that adherence to high ethical standards is of inestimable significance, not only for those participating in research but also for public acceptance of that research. This is particularly valid in Germany, where nonobservance and the undermining of ethical principles was grossly practiced in the first half of this century on the slippery descent into the abyss. Therefore, continued scrutiny with the increasing variety of ethical problems in medical research is demanded. However, this will be achieved not by taboos and prohibitive regulations but only through open discussion between scientists, particularly probands in research, patients' relatives, and the public. This leads to four demands: listening honestly and openly, both in single cases and in the public sector, training in recognition and consideration of ethical problems, and reducing unfavorable conditions such as complex bureaucratic regulations, negative public views, overzealous efficiency, and insufficient time. Sufficient numbers of qualified personnel are needed who are trained in listening and who will have the time to do so.