Risks and benefits of trial participation: A qualitative study of participants’ perspectives in Russia

Abstract

The risk-benefit assessment as performed by most interviewed trial participants involved multiple components, including the ones unrelated to the trial itself, and was largely context-dependent. Perspectives of research participants can enrich frameworks for the evaluation of trial risks and benefits.

The willingness to participate in biomedical research involving human beings in low‐ and middle‐income countries: a systematic review

“…The gaining of knowledge through research participation was mentioned 16 times overall, ranked in the top three reasons four times, and was given as the top reason in one paper to participate . Knowledge was ranked fifth in Sub‐Saharan Africa and Eastern Europe, in HIV research, by male and patient participants and for hypothetical studies.…”

“…The gaining of knowledge through research participation was mentioned 16 times overall, [25,27,41,44,54,59,60,62,67,73,76,81,82,[86][87][88] ranked in the top three reasons four times, [44,59,67,88] and was given as the top reason in one paper to participate [44]. Knowledge was ranked fifth in Sub-Saharan Africa and Eastern Europe, in [20,32,36,69,78], and ranked sixth overall.…”

Paying patient and caregiver research participants: putting theory into practice

“…Conversely, a study in Tunisia (Bouida et al 2016) found that most participants in medical research were motivated by altruism. In Russia, a study (Zvonareva et al 2015) into the risks and benefits of trial participation found that those with higher healthcare needs were more willing to participate in studies that provide some form of free treatment, such as regular check-ups, individual test results or access to a physician (Zvonareva et al 2015). Gatny and Axinn (2012) reported that pregnant women in the United States were more likely to participate in research if they expected to learn more about pregnancy health and get a free medical test, than if they were to receive a monetary payment.…”

“…, Zvonareva et al . ). Without established principles in this regard, it remains incumbent on the individual researcher to follow local institutional and study‐specific protocols to ensure that the requirement for voluntary participation is met and that consent is obtained without coercion (Ripley , Wertheimer & Miller ).…”

“…In Russia, a study (Zvonareva et al . ) into the risks and benefits of trial participation found that those with higher healthcare needs were more willing to participate in studies that provide some form of free treatment, such as regular check‐ups, individual test results or access to a physician (Zvonareva et al . ).…”