Select Committee on Health Written Evidence


Annex

EXTRACT FROM THE NUFFIELD COUNCIL ON BIOETHICS REPORT GENETICS AND HUMAN BEHAVIOUR: THE ETHICAL CONTEXT

"MEDICALISING" HUMAN BEHAVIOUR

  13.13  Traits such as sexuality, aggression and intelligence have in the past been thought of as outcomes of inheritance, family background, socio-economic environment, individual choice and even divine intervention. If research in behavioural genetics identifies the influence of genes on such traits, they may mistakenly come to be thought of as being fundamentally determined by genetic factors and even as aspects of life which belong to one's "fate" (see paragraphs 12.10-12.15). Indeed, being diagnosed as at risk of disease may have a tendency to make healthy people feel ill, or feel fatalistic about their chances of survival, despite the existence of diets, life-styles or treatments to avoid the development of disease. It is possible that information about genetic factors that indicate susceptibility to a disease may make people think that the unwanted outcome is inevitable.[104] It has been suggested, that the word "genetic" is interpreted as synonymous with something fixed or unchanging in Western culture, when it is used in relation to disease.[105] With regard to behavioural traits, therefore, information about genetic susceptibility might engender similarly fatalist beliefs.

  13.14  As the reviews of the evidence indicate, fatalism about genetics is a misconception. Even when behavioural traits are influenced by genes, there are always other influences, and the existence of genetic influences does not show that we are powerless to change or modify our character: "scientists may well identify an allele that causes a genetic predisposition to shyness, but such a discovery does not mean that shyness cannot be overcome."[106] Nonetheless, this misconception is pervasive and gives rise to the anxiety that behavioural genetics will lead to the "medicalisation" of those who are found to be genetically predisposed to certain behavioural traits.

  13.15  At the root of concerns about medicalisation is the idea that behavioural traits that have previously been regarded as "normal" will come to be viewed as "abnormal" or pathological. In addition, behavioural traits within the normal range may turn out to be amenable to influence by pharmacological interventions as a result of knowledge about the biological factors that affect them. Concerns about medicalisation have been expressed for many decades, for example in relation to the increasing number of psychiatric conditions that are recognised, and in the increasing use of medicines. In the era of genetic research, the fear is that the identification of the influences of genes will exacerbate this trend, encouraging the re-classification of behavioural traits as within the realm of medicine.

  13.16 In some cases genetic research may indicate that a behavioural trait is one for which medical interventions are appropriate and welcome. Findings from research concerning the biological basis of addiction to alcohol, and of autism, helped to liberate individuals and parents from the charges previously laid against them of moral weakness and of neglecting their children respectively. In such cases, it should be acknowledged that this "medicalising" tendency is beneficial: the research helps to confirm the view that the individuals concerned should be perceived as ill, rather than bad, and in need of medical help, rather than discipline and punishment.[107]

  13.17 However, in other cases, medicalisation may have adverse effects. One such problem is that of diagnostic spread, or the tendency for disorders to be broadly defined so that more and more individuals are caught in the diagnostic net. This tendency may arise as a result of an erroneous assumption that once a biological influence on a trait has been identified, the trait becomes the proper subject of medical intervention. Or, it may be that if medicines are developed that have an effect on a trait, that trait will come to be seen as a disorder, or something to be treated and altered.

  13.18  An example of this latter phenomenon is the prescription of methylphenidate (Ritalin) to children with Attention Deficit Hyperactivity Disorder (ADHD). This example is controversial because there are undoubtedly some children who have serious behavioural problems and who benefit greatly from the drug. It would be wrong to suggest that ADHD has been invented; indeed, the condition has been recognised for many decades. However, the advent of medicines that are effective in improving concentration and reducing hyperactivity is a fairly recent development. In 1999, the US National Association of State Boards of Education estimated the number of children taking Ritalin on a daily basis at between 1.3 and 2 million. The National Institutes of Health in the US has recently undertaken a study to examine prescribing practices.

  13.19  Similarly, the producers of new "anti-shyness" drugs, such as Paxil and Luvox, have been accused of applying to normal behaviour, interventions developed for pathological traits.[108] Paxil is licensed in the US for the treatment of depression, Social Anxiety Disorder (SAD), Generalised Anxiety Disorder (GAD),[109] Obsessive Compulsive Disorder, Panic Disorder and Post-traumatic Stress Disorder. The Paxil website notes that approximately 10 million adults are diagnosed with GAD each year in the US.[110] The website encourages individuals to take an online "self-test" for GAD, which involves answering three questions:

    1.  Do you worry excessively or are you anxious a lot of the time?

    2.  Are you often bothered by the following:

          —  Feeling restless, keyed-up, or on edge?

          —  Feeling tense?

          —  Feeling tired, weak, or easily exhausted?

          —  Having difficulty concentrating?

          —  Feeling irritable?

          —  Having difficulty sleeping?

    3.  Would you say your anxiety or worry interferes with your work, family or social life?

  Answering "yes" to more than one of the complaints listed in question 2, even if the answers to questions 1 and 3 are negative, is sufficient to generate a response that says the results are inconclusive and suggests discussing them further with a health professional.

  13.20  A similar self-test can also be undertaken for SAD, the key symptoms of which are a persistent fear of and an associated avoidance of social situations involving strangers. In an article in the New York Times Magazine about SAD, one commentator observed:

    "until recently, it was thought to be a rare disorder . . . Then in 1999, buoyed by the success of the new psychotropic drugs, the pharmaceutical company SmithKline Beecham began marketing its antidepressant Paxil as a treatment for social phobia . . . Experts cited alarming new statistics—around 13% of us were socially phobic, for example—and magazines dished up the requisite alarmist trend stories. A set of traits and behaviours, at least some of which were once regarded as neutral, or even desirable, re-emerged as a pathology—a function of brain chemistry, amenable to and indeed demanding pharmacological manipulation."[111]

  13.21  These examples can be viewed as illustrations of diagnostic spread, the re-classification of behavioural traits, and the possibility of commercial and social pressure to make use of medical interventions. While these examples are not the result of findings in genetic research, they demonstrate the existence of a tendency towards medicalisation, and corresponding problems, to which findings in genetics may contribute.

  13.22 A further potential problem related to medicalisation is the tendency to focus excessively on the biological factors that influence particular traits, rather than the social or economic factors. In paragraph 3.17, we observed that those factors that are described as the "cause" of a particular trait are often those by which one hopes to control or alter that trait. Thus, there is a risk that the role of genetic factors will be over-estimated, so that genetic and medical interventions can be provided, rather than focusing on the social and economic environments which are also likely to play a vital role. This may be so even though there is no scientific reason for assuming that if genetic influences on a trait are identified that trait will be easier to alter using medical or genetic interventions rather than other forms. Examples of this phenomenon include the risk that medicines may be prescribed for children who are disruptive but do not have a clinical diagnosis of hyperactivity, rather than investigating other approaches such as reducing class sizes, and that medication may be used rather than diet and exercise as strategies for dealing with hypertension or obesity.

  13.23  Medicalisation is an issue that affects many areas of life, not just behavioural genetics. In the case of behavioural traits, since research into genetic influences is at an early stage, it is not possible to say whether medicalisation will be likely, or whether it will have, on balance, positive or negative implications. However, examples of the deleterious effects of medicalisation in other areas suggest the need for awareness of potential problems. We conclude that research in behavioural genetics has the potential to contribute to the existing phenomenon of medicalisation. Deleterious effects that should be borne in mind include shifting the boundary between normal variation and disorder further away from the extremes of variation; reducing social tolerance of previously "normal" behavioural traits; and the routine selection of genetic or medical interventions without adequate consideration being given to environmental interventions and other options.

  13.24  Any discovery of biological mechanisms that influence behaviour, including genes, may aid in the development of drugs which modify behaviour. We consider that there is potential for the unhelpful widening of diagnostic categories, to encourage the use of medication by people who would not necessarily be thought of as exhibiting behavioural traits outside the normal range. In addition to the potentially harmful effects already listed, this could lead to unnecessary increased expenditure by the health service. We recommend that health service providers, and in particular the Department of Health, specifically charge a named agency with monitoring and, if necessary, controlling, this means of the deliberate medicalising of normal populations.







104   Senior, V, Marteau, T M & Weinman, J (1999). Impact of genetic testing on causal models of heart disease and arthritis: an analogue study, Psychol. Health 14, 1077-88. Back

105   Marteau, T M & Senior, V (1997). Illness representations after the human genome project: the perceived role of genes in causing illness. In Petrie, K J & Weinman, J A, editors. Perceptions of Health and Illness: Current Research and Applications. Reading, UK: Harwood Academic Publishers. pp 241-66. Back

106   Rothstein, M A (2000). Genetics and the work force of the next hundred years. Columbia Bus. Law Rev. 2000 (3), 371-401 at p 383. Back

107   See for example Conrad, P & Schneider, J W (1992). Deviance and Medicalisation: From Badness to Sickness. Philadelphia: Temple University Press. Back

108   See for example Koerner, B I (2002). First, you market the disease . . . then you push the pills to treat it. The Guardian, (30 July). Taken from Koerner, B I Disorders made to order. Mother Jones magazine. July/August (2002). Back

109   GAD is psychiatric disorder which features in the two main classification systems for mental illness, the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) and the ICD-10 Classification of Mental and Behaviour Disorders. Back

110   http://www.paxil.com (17 July 2002). Back

111   Talbot, M (2001). The shyness syndrome: bashfulness is the latest trait to become a pathology. New York Times Magazine 24 June. Back


 
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Prepared 26 April 2005