Genetics of alcoholism

GENETICS OF ALCOHOLISM: ETHICAL AND SOCIETAL IMPLICATIONS

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R. Berghmans, J. de Jong, A. Tibben en G. de Wert

(EACME Newsletter July 2007)

This study was conducted in the context of both Maastricht University’s research institute CAPHRI and the Centre for Society and Genomics (Nijmegen), and is part of the research line ‘Ethics of Genomics’.

In the ethical and societal debate regarding developments in human genetics, behavioral genetics is a relatively neglected area. This is remarkable, not only because a lot of research is taking place in this area, but also because this research raises many normative questions. The research project covered a specific domain within behavioural genetics: the genetics of alcoholism. This is an exemplary case of multifactorially determined behaviour.
As behavioural genetics in general, the genetics of alcoholism is controversial. Pitfalls include genetic determinism at the cost of a neglect of societal determinants of alcoholism, and stigmatisation. Presuming, however, that in the future genetic susceptibility tests with an acceptable predictive value will be developed, hopeful expectations are being raised about possible early detection and preventive/therapeutic applications of the genetics of alcoholism. Clearly, both genetic susceptibility testing (individual diagnosis and population screening; testing of minors and adults, and possibly embryos/fetuses) and different kinds of preventive and therapeutic interventions (medical, genetic and environmental, in different target groups) need anticipatory debate.
Aim of the project was the proactive exploration of the ethical, cultural and societal implications of the genetics of alcoholism in order to contribute to the development of normative instruments for future ‘good clinical practice’ and adequate policy making.
The following research questions have been addressed:

• What is the state of the science with regard to the genetics of alcoholism? What future developments are being expected by experts in the field?

• What are the potential future applications of this knowledge in humans (tests and interventions)?

• What normative, cultural and societal aspects and considerations should be taken into account in the (possible) development and modelling of research, education, (health) care and policy regarding genetics and alcoholism?

This project has been developed and conducted in close and continuous interaction with stakeholders: researchers in the fields of genetics and alcoholism (geneticists, social scientists, researchers in health education), (ex-)addicts, health care workers, policy makers, and ethicists/philosophers. For instance, in September 2005 focus group interviews with the stakeholders have been held. In an open format the participants were invited to express and articulate their intuitions, concerns, opinions and expectations regarding the genetics of alcoholism. Also a number of in-depth interviews with selected stakeholders were conducted. In November 2006, a focus group meeting with (ex-)addicts was held on two important issues: the changing conceptualisation of alcoholism and the desirability of predictive genetic testing.
Plenary meetings with all stakeholders were held to discuss (preliminary) results. Also, provisional recommendations for research, policy and public education were formulated.

Conclusions include:
The modern conceptualisation of alcoholism as a chronic brain disease holds promises (better treatment and prevention), but also involves risks (determinism, fatalism).
Although there is scepticism among stakeholders regarding the practical application of the genetics of alcoholism, some think that in the foreseeable future susceptibility testing may yield valuable information on individual risk to alcoholism. Clearly, a proactive debate about the desirability of such testing and points to consider is of utmost importance.
The genetics of alcoholism underscores the need to focus preventive strategies/efforts on high-risk groups such as youth and children of alcohol dependent parents. Evidence based preventive interventions targeted at these groups should be combined with proven effective universal measures.

The neurobiology of alcoholism raises difficult ethical questions concerning the autonomy and responsibility of alcohol dependent persons. Yet, being alcohol dependent in itself does not justify coercive treatment.

For more information about this project, please contact: Johan de Jong
Maastricht University, FHML, Dept. Health, Ethics and Society

johan.dejong@zw.unimaas.nl