Citizenship, genomics, and mental health: an empirical bioethics study of young people’s attitudes towards advances in autism genomics

Background: This empirical bioethics study is motivated by a commitment to involving young people, who are genomic citizens ‘in the making’, in the bioethics debate around psychiatric genomics. Central to discussions of this kind is the concept of biological citizenship, and its related notion of genetic responsibility, which in Nikolas Rose and Carlos Novas’s formulation prescribes biological citizens to actively seek genomic information, and engage in risk calculations to maximize health outcomes and minimize the chances of illness. The focus of the present investigation on psychiatric genomics, and the involvement of children, cast doubts on some assumptions underpinning Rose and Novas’s account, which should therefore be put to the test both in relation to psychiatric settings and from the perspective of young people.
Aims: (1) To conduct an empirical qualitative study on young people’s views of autism and moral attitudes towards using genomic information for the prediction, prevention and treatment of autism, and distil the arguments underpinning young people’s views and attitudes; (2) to use the results of the qualitative study to inform an understanding of the meaning that young people attribute to the notions of biological citizenship and genetic responsibility in mental health.
Methods: This research used a case study approach focused on autism genomics. Fifty-six young people between 13 and 18 years old from the general population in England participated in 12 focus groups divided into two parts. Part 1 focused on their views of what autism is and is caused by, and whether they thought autism should be conceptualized as a disorder, disability, or difference. Part 2 investigated their moral attitudes towards: (1) prenatal diagnosis and preimplantation genetic diagnosis to prevent autism before birth; (2) genetic tests performed on young children to assess their susceptibility to autism for early intervention purposes; and (3) pharmacological treatments targeting specific risk markers or subcategories of autistic people with the same genotype.
Results: Young people viewed autism as a ‘dimensional’ condition on a continuum of traits, severity and causes, which informed their ‘uncertainty’ about whether autism should be conceptualized as a disorder, a disability, or a difference. This explains why they did not hold clear-cut attitudes towards interventions to predict, prevent and treat autism, but proposed prima facie arguments in favour/against. They used the principles of autonomy, beneficence and best interests to argue that the interventions should be made available. However, their endorsement of a dimensional understanding of autism and their uncertainty about how it should be conceptualized motivated a range of concerns around the potential for imposing ‘coercive measures’; the risk of encouraging ‘stigmatizing’ views of autism; the risk of reducing ‘diversity’ in society; the impact that the interventions may have on ‘identity’; and the ‘limited clinical validity and utility’ of the interventions. Thus, some participants interrogated the meaning of ‘being a good parent’.
Discussion: When discussing their moral concerns around advances in autism genomics, participants did not endorse the ethical framework underpinning Rose and Novas’s approach. Rather, young people’s ‘genomic citizenship in the making’ prioritizes an ethical framework that promotes citizens’ responsibilities for respecting people’s identity, accepting and loving diversity, and rejecting stigma, and moves beyond genetic essentialism and determinism. This research makes the case for an expanded notion of biological citizenship to include the ethical framework promoted by young people’s genomic citizenship in the making.
Conclusion: This is the first investigation of how children wrestle with ethical considerations in neuropsychiatric genomics. It makes a theoretical contribution to the literature on biological citizenship, by deriving an empirically grounded conception of what being a biological citizen in mental health means to young people. This thesis highlights the considerable potential for the involvement of young people in bioethics research and debates, and lays the groundwork for future opportunities to consider what bioethicists can learn from listening to young people’s views of and attitudes towards currently pressing debates.

Keywords: young people
biological citizenship
mental health
empirical bioethics
genetic responsibility
ethics
autism
psychiatric genomics
Advisor: Singh, I
Hallowell, N