Ethics and Psychiatric Genetics: Involving Minors in the Debate

Since I was accepted for a DPhil at the University of Oxford, I have enjoyed people’s expression of surprise when they hear that I am based in the Department of Psychiatry – what is a philosopher doing in the Department of Psychiatry? When I then add that my project focuses on the ethical implications of the advances in psychiatric genetics, the need for further details becomes obvious. Therefore, I thought I could take the opportunity to write a blog post on my research project to explain why a normative perspective is essential in the exploration of the genetics of mental illness.

What has science taught us so far?

We have known for a long time that most mental illnesses have a genetic component, and so, are in part heritable. For instance, the children whose biological mother suffers from schizophrenia are 10 times more likely to develop the condition than the general population (Gershon and Alliey-Rodriguez 2013). Thanks to the recent improvements in genomic technologies, scientific efforts have been shifted from family studies to the identification of the biological correlates of mental illnesses. Genome-wide association studies have been the key tool for significant findings in the genetics of conditions such as schizophrenia, bipolar disorder, and autism. In the non-too-distant future, these discoveries may be translated outside the research context to achieve the following goals:

  1. Identifying better medical treatments based on patients’ genetic profiles;
  2. Developing pharmacological/environmental forms of prevention;
  3. Developing predictive genetic tests that may provide a more accurate calculation of risk profile.

My doctoral research investigates the ethical implications of the third point.

This is science fiction!

Some of you may think that the idea of developing psychiatric predictive genetic testing will only be material for conversations among armchair philosophers. Mental illnesses are multifactorial disorders resulting from the complex combination of genes and environment. As we have a limited understanding of this interaction and there is considerable variability in the results of genetic studies, at present psychiatric genetic testing cannot be considered as a feasible option. Why should we then bother to discuss the ethics of this intervention?

Having done some research on this topic myself, my conclusion is that the ethical discussion is necessary for the following reasons:

– Scientific applications considered unfeasible and futuristic (e.g. induced pluripotent stem cells) often turn into a reality within time, which may be the case in the field of psychiatric genetics too.

– Medical practice seems to be evolving in such a way that psychiatric testing may likely become the work of clinics. To give an example, in 2012 Jehannine Austin (University of British Columbia) founded the world’s first Psychiatric Genetic Counselling Clinic, which has served as a model for a similar project within the UK.

– The lack of understanding of the gene-environment interaction justifies why further scientific research is needed. The ethical implications should be explored simultaneously to ensure that the findings of these studies are translated into morally responsible medical options.

– Even though it still lacks clinical validity, psychiatric genetic testing has already been offered by some direct-to-consumers genetic companies (e.g. 23andMe), meaning that such testing is already a reality. This again urges us to become aware of the potential harms and benefits that may arise.

From adults to minors

Some empirical studies have already investigated the moral perspectives of adult patients, their carers, geneticists, and psychiatrists on the recent advances in psychiatric genetics. From these studies, several hopes and concerns about psychiatric genetic testing arose, among which:

– The identification of biological correlates to mental illnesses may reduce stigma associated with them;

– However, the results of psychiatric genetic testing may also lead to insurance and employment discrimination;

– Scientific research may increase access to treatment and prevention of mental illnesses;

– A positive test result may increase anxiety about one’s future.

Curiously enough, however, children and adolescents have not been involved in this debate. Yet, they are likely to become the main target of psychiatric genetic testing, as it is most useful if offered at a young age. It is, therefore, time to give them a voice, and that will be the aim of my research. By responding to the increasing call for involving patients and the public in research, my project will provide a more complete and meaningful conception of the public’s views about psychiatric genetic testing, which will help to anticipate the potential arising benefits and harms associated with it.

With this short introduction, I hope I have settled some of the confusion behind the aforementioned surprised faces. But more importantly, I hope I have attracted many more wondering minds to this fascinating field of knowledge. After all, as Aristotle said, “It is owing to their wonder that men both now begin and at first began to philosophize”.

Suggested readings

Hoge SK, Appelbaum PS. Ethics and neuropsychiatric genetics: a review of major issues. Int J Neuropsychopharmacol 2012;15(10):1547-57.

Wilde A, Meiser B, Mitchell PB, et al. Public interest in predictive genetic testing, including direct-to-consumer testing, for susceptibility to major depression: preliminary findings. Eur J Hum Genet 2010;18(1):47-51.

About the Author

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Arianna Manzini is a DPhil student at the Department of Psychiatry, University of Oxford. She works on the Citizens: Early Intervention Ethics study under the BeGOOD flagship project.

View Arianna’s BeGOOD project profile

View Arianna’s University of Oxford profile

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This blog post is based on the opinions of the author and does not necessarily represent the views of the University of Oxford or the Oxford Department of Psychiatry.

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