Why do people volunteer in research?

Altruism and kinship to the beneficiaries of research

Zenovia, healthy volunteer in HIV vaccine research

‘...my uncle passed away from complications due to AIDS. My family referred to his disease as cancer—a partial truth resulting from their inability or unwillingness to be honest with themselves and others (…) I want to do all I can to raise awareness in the community about HIV/AIDS and help those infected with the virus get the support they need.’

 (Quoted from: U.S. NIH National Institute of Allergy and Infectious Disease) ⁽¹⁵⁾

Potential cure when there are no other effective treatments

Hong Meng, 12 years old, heart disease

‘My mum told me everything’s going to be alright, but I know, from the look in her eyes, it’s telling me that the current treatment is not helping me.’

Hong Meng’s mother

‘…no one could help me, until I saw a gleam of hope that could turn my life around. A clinical trial offers hope and possibilities that do not otherwise exist. I am embracing every possible treatment there is.’

(Quoted from: Clinical Research Malaysia, 2015) ⁽¹⁶⁾

Health consciousness and access to better monitoring

Dr Nash, volunteer in dementia research

‘Every day I think about, about the Alzheimer’s. I have the memories of my mother and my father and my brother and my aunt and my grandmother (...) I wanted to get involved. I want to be monitored so that if I had a problem then I was going to quit practicing medicine.’

(Quoted from: U.S. NIH National Institute on Aging, 2012) ⁽¹⁷⁾

Financial incentives

David, healthy volunteer in phase 1 leukaemia drug trial

‘When I saw the ad I was like… two thousand pounds for three days work seemed like a good deal to me, considering I had done two previous trials and.. and it wasn’t, it wasn’t hard work.’

(Quoted from: Real stories, 2018) ⁽¹⁸⁾