Researchers and Volunteers: From Paternalism to Partnership

Gone are the days when research volunteers were kept in the dark and were uninformed about the terms of their participation in research. Fortunately, the last ten years has seen a shift from a paternalistic relationship between researchers and their research volunteers, towards a partnership. The evidence for this is the use of public advisory groups that inform the research process, and surveys whose results are used to inform social policy; both of which play a crucial role in the Public Involvement and Engagement programme at the Department of Twin Research, King’s College London (KCL).

KCL is a leading exemplar of how to involve research volunteers in the design and delivery of research. The Stroke Research Patients and Family Group, established in 2005 was one of the first patient advisory groups in the country and there are now over ten advisory groups at KCL, most of which focus on specific conditions such as cancer, heart disease or dementia.

In 2009, the Department of Twin Research (DTR) established a twin volunteer advisory panel (VAP) to ensure that the opinions and views of twin volunteers are taken on board during the development and running of the DTR’s research programme.  The DTR has benefited in many ways from their help and advice. Who better than twin volunteers to inform the DTR on:

  • – what kind of twin research is relevant and appropriate
  • – whether the questionnaires are clear and accessible
  • – the best ways to encourage and maintain volunteer interest
  • – how to improve communications and engagement

 

In the words of a current VAP member “Being a VAP_2014member of the VAP is a unique chance to represent the interests of others…you’ll become a trusted consultant within the context of a busy and world-leading science organisation.” To read more about what it’s like to volunteer on the advisory panel, please CLICK HERE.

However, with 13,000 members of the twin registry, the DTR cannot rely on the views of the VAP alone.  Over the years, it has endeavoured to listen to the opinions and views of a broader group of volunteers through a series of questionnaires on contentious issues such as cloning (1) and internet-based personal genome sequencing (2).

The results of the DTR’s latest public attitudes survey “Evaluating the Consent Preferences of UK Research Volunteers for Genetic and Clinical Studies”(3)  were recently published in PLOS ONE, a high profile journal. Informed consent is defined as “a process by News_Headlineswhich a subject voluntarily confirms his or her willingness to participate in research, after having been informed of all relevant aspects of the research.” The purpose of the survey was to establish the views of research volunteers on the consent process such as the use of online versus face-to-face consent and the use of DNA and medical information in different research scenarios.

“Nearly 60 years since the term ‘informed consent’ was coined by Paul G. Gebhard, it is hard to imagine that there have been no previous large-scale surveys or consultations examining the preferences of research volunteers regarding the consent process” says Juliette Harris, a lead investigator of this study.  It is hoped that the results will contribute to the debate on new and more relevant models of consent for participation in research.

Ascertaining research volunteers’ opinion, whether by advisory panel, surveys or other methods, is still not widely practiced in the research community. Hopefully, however, the shift from paternalism to partnership will mean that one day research volunteers will be involved in all aspects of research, from the design of protocols to new models of consent. Fortunately the twins who take part in research at the Department of Twin Research can rest assured that their voices are already being heard, loud and clear.

(1) Prainsack B, Cherkas LF, Spector TD. Attitudes towards human reproductive cloning, assisted reproduction and gene selection: a survey of 4600 British twins. Hum Reprod. 2007 Aug;22(8):2302-8.

(2) Cherkas LF, Harris JM, Levinson E, Spector TD, Prainsack B. A survey of UK public interest in internet-based personal genome testing. PLoS One. 2010 Oct 19;5(10)2.

(3) Kelly SE, Spector TD, Cherkas LF, Prainsack B, Harris JM. Evaluating the Consent Preferences of UK Research Volunteers for Genetic and Clinical Studies. PLoS One. 2015 Mar 11;10(3)