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Public Attitudes to Research

Consulting the Public

It is important that the public is consulted in relation to many topics related to research. We have highlighted some resources in this area which may be of interest to you:

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A report in 2016 on the Northern Ireland Life and Times survey (NILT) on public attitudes to data sharing in Northern Ireland has found that there is strong public support for the sharing of personal data for research purposes where a clear benefit to society can be demonstrated. It is the first survey of its kind to measure attitudes towards data sharing in Northern Ireland, with a focus on health data. Download the report here>

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In 2013 the Health Research Authority (HRA) carried out a survey of the general public attitudes towards health research.

Also see http://www.hra.nhs.uk/news/category/patients-and-public which will take you to an updated survey which shows 97% of the public think health research is important and 74% of people think every patient should be offered the opportunity to participate in research.

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In 2014, Ipsos MORI conducted a study in partnership with the British Science Association, on behalf of the Department for Business, Innovation and Skills (BIS) and the Economic and Social Research Council (ESRC) on Public Attitudes to Science

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Wellcome, a major funder of health and social care research has published many useful articles on this topic: https://wellcome.ac.uk/what-we-do

For example, in the course of a study involving human participants, researchers may make a finding that has potential health or reproductive importance to an individual participant (Health Related Findings or “HRFs”). Whether and how HRFs should be fed back to the research participant is currently subject to intense debate. Given the absence of guidance and lack of evidence and consensus on how HRFs should be handled, a framework developed by Wellcome and the Medical Research Council (MRC) has been developed to help researchers identify and consider the relevant issues when designing and implementing a policy on the feedback of HRFs. It also provides useful guidance for members of Research Ethics Committees and Research Governance Committees. The report can be downloaded here and page 2 contains the framework.

http://www.mrc.ac.uk/documents/pdf/mrc-wellcome-trust-framework-on-the-feedback-of-health-related-findings-in-researchpdf/

Also read the 2012 report on Assessing Public Attitudes to Health Related Findings in Research

 

The development of this framework was informed by a wider project, including: a review of the international literature focused on the legal and ethical issues; a review of existing policies and practice in the UK and US; an analysis of the costs and timescales associated with feedback in genetics and imaging studies; research on public attitudes towards the feedback of HRFs, which found that generally there is a strong preference for feedback particularly where a condition is serious and treatable; and a workshop focusing on the legal issues associated with HRFs.

More information can be found at the link: https://wellcome.ac.uk/what-we-do/teams/public-engagement-team/