A major new report based on a public dialogue around genomic medicine was launched last week. A Public Dialogue on Genomic Medicine: Time For A New Social Contract? was commissioned by Genomics England, co-funded by UK Research and Innovation’s Sciencewise, with empirical research by Ipsos MORI’s Public Dialogue Centre. The Oversight Committee for the project was chaired by Dr Anna Middleton, Head of Society and Ethics Research
The dialogue involved a series of detailed discussions between experts and a cross-section of members of the British public, exploring how the new era of genomic medicine could impact us all and whether it is time to update the ‘social contract’ between the health service and patients. This means – what do patients expect in return for their genomic data being used to help support clinical diagnoses in others, as well as supporting research. Genomic medicine can only succeed if each person who has a genomic test agrees for their genomic data to be deposited into a database so that it can be aggregated with, and compared to, the DNA of others – this is how test results are interpreted, and how researchers can discover patterns between health and disease. Thus, big data and genomics go hand in hand and publics need to know this is part and parcel of having genomic testing.
Understandably, the concept of a social contract was not one that the public was familiar with, but when framed as a ‘deal’ where both sides sign up to something, there were many areas of agreement. Discussion highlighted three key areas which contribute to a partnership between patients and the genomic medicine service: reciprocity, altruism, and solidarity. These areas cover the some of the keystones of the NHS, including the provision of evidenced-based healthcare; and care that is free at the point of use. The dialogue revealed that although these core elements of the social contract would need to remain in the age of genomic medicine, they might intersect in new ways.
For example, identifying the genetic markers associated with health or disease requires data from thousands of individuals. The participants in the dialogue saw giving their data as an altruistic act – but also expected that their families might benefit from it, blurring the boundaries between altruism and reciprocity. Participants also thought that government and healthcare policy makers would need to create a roadmap for genomics where the status of data donors is made clear, and any rewards for them carefully worked out.
A significant change to the social contract that participants agreed genomic medicine would prompt was, “genomics changes the expectation that clinicians will only share data with those involved directly in patient care”. This leads to new duties of care for both researchers and clinicians. It was acknowledged that this was a complex situation, with little room for a ‘one size fits all’ solution. But ultimately the public participants agreed “to accept the uncertainty of not knowing what information genomics might reveal, and trade off complete confidentiality against potential benefits for themselves and others, as part of their broad consent to participate in genomics research.” They also felt that clinicians and researchers should be equipped with “genomic literacy” to support the needs of patients and data donors, providing much more information than is currently given to research participants about the meaning and ethical implications of test and results.
The dialogue also revealed that there were some clear red lines for the public around genomic data use, with political uses for monitoring different groups, predicative tests for insurance cover, and targeted marketing, all drawing opposition.
This report resonates with much of the work that the Society and Ethics Research group are involved in, especially around approaches to people-powered conversations on genomic data. Dr Anna Middleton, Head of Society and Ethics Research, said, “It is time for the conversations around the impact of genomic medicine to go mainstream – even if you are not currently a patient, you may be related to someone who is and the decisions they are making about the donation of their data, have implications for you. The only way genomic medicine will succeed is via the ability to access incredibly large datasets of genomic and health data – it is the ability to compare our DNA to others that will unlock the links between health, disease, environment and genetics. But in order have a public voice on the policy and governance structures around genomic data sharing, we need to explain why this matters and engage with public audiences so they can be part of the conversation.”
The Society and Ethics Research Group are already exploring many of the facets that contribute to increasing public dialogue, for example: how to start a conversation about genomics, how to build a bridge to public audiences using film so that they can share their attitudes on genomic data sharing, and how to here.