Genetics and early intervention: Exploring ethical and policy questions
This report presents a set of findings and recommendations from a series of workshops convened to discuss the potential of genetic data in early intervention.
The report, by EIF director of evidence Tom McBride with Dr Kathryn Asbury (University of York) and Dr Kaili Rimfeld (King's College London) sets out to begin an important conversation about whether and how genetic research might be used in early intervention and social policy, and to better understand the potential benefits and risks.
The science of genetics is advancing rapidly, and it is increasingly possible to identify at birth children who have an elevated likelihood of outcomes such as struggling at school or being diagnosed with a learning, behaviour or mental health condition. Given our commitment to using evidence to support children, we are open to the idea that in future it may be possible to use this genetic data, alongside other data, to identify those who could benefit from additional support. But using genetic data in the design and delivery of early intervention services raises some profound ethical challenges.
To explore these issues, we convened a series of workshops with experts from a wide range of backgrounds, to discuss the following question: Can genetic data be used to improve outcomes for children and families, without marginalising individuals, entrenching disadvantage or increasing inequalities? This report outlines the key risks and challenges they identified, highlights areas of consensus and disagreement, and draws out a set of recommendations for the political, social policy and research communities.
"The issues we discuss here are not science fiction but, rather, realistic choices that society will face in the coming decades. We feel that a full and open debate on how society will respond to and address these issues is needed."