A vital conversation: facing up to some critical questions about using genetic data in early intervention
EIF director of evidence Tom McBride, co-author of a new report on genetics and early intervention, explains why it is so important to start asking big questions now about how genetic data might ethically be used in social policy responses, including early intervention, in the future.
Today we have published our report Genetics and early intervention: Exploring ethical and policy questions, which I co-authored with Dr Kathryn Asbury and Dr Kaili Rimfeld. This is new territory for EIF: rather than analysing and synthesising the existing evidence on an area of early intervention, in this report we have set out to explore if and how the emerging evidence from the science of genetics could be used to shape children’s services in the future, and the ethical implications that this entails.
The science of genetics is advancing rapidly, and it is becoming increasingly possible to identify – from birth – children who may be at an elevated risk of particular outcomes, including struggling at school or being diagnosed with a learning, behaviour or mental health condition. Although such predictions are far from perfect, they are meaningful – in some cases, similar in their predictive power to other, more familiar measures of risk, such as family income. Given our commitment to ensuring the best available evidence is used to support children and young people at risk of poor outcomes, we are open to the idea that in the future it may be possible to use this data, alongside demographic or diagnostic data, to identify children who would benefit from additional support.
However, using genetic data in the design and delivery of early intervention services raises some profound ethical challenges. We therefore undertook this work with the intention of beginning an important conversation about whether and how genetic research could be used in early intervention and social policy, and to better understand the potential benefits and risks in order to inform future directions. It is important that society is encouraged and enabled to debate these issues now, so that when in the future genetic data is being used in this context, that comes after a conversation about these ethical questions, and not before.
The question we sought to address with this work was this: can genetic data be used to improve outcomes for children and families, without marginalising individuals, entrenching disadvantage or increasing inequalities? We did this through a series of workshops which engaged experts with diverse specialisms and backgrounds, including in the fields of education, ethics, genetics, law, social policy, sociology and psychology.
Crucially, these discussions were framed around a set of principles – that the use of genetic data in early intervention and social policy will only be ethically justifiable if:
- it is used to support children who have an elevated risk of poor outcomes or an increased likelihood of facing greater levels of challenge than their peers
- participation is based on fully informed consent
- it does not discriminate against individuals or violate their human rights
- it can be used to improve outcomes without marginalising individuals, entrenching disadvantage or increasing inequalities
- it is not used to justify prejudice against any group or to reinforce scientifically invalid theories, such as eugenics or assertions of biological race; and
- there is a high degree of public engagement with and support for its use, including from marginalised and minority communities.
Our findings recognise the potential that genetic data has to inform research into underlying causes and effective interventions for children at risk of poor outcomes, and highlight a range of practical and ethical challenges that would need to be addressed before using genetic data in early intervention could be considered.
We are clear in this report that there is a need for much greater public understanding of the science and its potential implications – to increase awareness of the issues, tackle misconceptions and build trust – as a prerequisite for even considering the use genetic data in social policy.
Our aim in producing this report was to start an important conversation, one which was grounded in the science and informed by a clear view of the ethical and policy challenges. We hope that others will build on this work, take the debate forward, and act on the recommendations that we make.