Crowdfunding of clinical trials under scrutiny in Nature

The leading scientific journal Nature is hosting a debate on the crowdfunding of clinical trials. Crowdfunding is greatly facilitated by online platforms and is becoming increasingly common, including in the biomedical sciences. Asher Mullard reported in Crowdfunding clinical trials that investigators have found 20 crowdfunding projects, of which 62% had met their fundraising objectives, and that this channel of funding can become attractive as public and corporate funding decreases. However, there are concerns about whether crowdfunding is ethically appropriate, as these trials “side step scientific peer review, co-opting the ‘therapeutic hope’ of desperate patients to proceed despite potentially little or no scientific foundation” (Allard, ibidem.). A more resolutely negative view on crowdfunding has been defended by Phaik Yeong Cheah in Crowdfunding not fit for clinical trials, arguing that:

One problem is that funding recipients are not accountable to the public because crowdfunding is unregulated. Another is that there is no setting of research priorities, so crowdfunded clinical trials may not be the most important or widely applicable ones. And media tactics could attract emotional donations, for example by generating false expectations of a ‘cure’. Moreover, an inconclusive or negative outcome could erode public trust.

While these are all pressing issues, the next step of this argument is rather unconvincing. Cheah argues that “by contrast, the mainstream funding process for clinical trials takes into account disease prevalence, morbidity and mortality, justice and utility. Crowdfunding for clinical trials should be similarly regulated to mitigate its potential risks”. However, this vastly underestimates the problems of current funding systems. We have raised this point in the comment section of the website:

[Cheah´s] approach to the ethical assessment of crowdfunding is blind to the flaws of existing funding sources and mechanisms, thereby missing the opportunity to use crowdsourcing to address some of these flaws. A better ethical analysis would assess whether crowdsourcing can be employed (and regulated) as additional funding channel in order to address some of the limitations of extant funding processes, such as for instance the problem of orphan diseases.

David Hawkes and Melanie Thomson recently replied to Cheah along the same lines in Clinical trials: Crowdfunded trials doubly scrutinized, with very instructive references to “rare or emerging tropical diseases that might not otherwise attract financial support”. Interestingly, they argue that crowdfunding is “still governed by the same high standards of research integrity as traditionally funded recipients — but with the added scrutiny that comes with public engagement”.

Ultimately, it is a disagreement on emphasis. Cheah emphasizes the novelty and hence the unknown risks attached to crowdfunding, whereas Hawkes and Thomson are keenly aware of the problems of the current system and are ready to explore new channels to address them. The latter approach has one key advantage: even if crowdfunding does not become the next big thing in financing research, it allows us to diagnose those limitations of extant funding systems that – with or without crowdfunding – need to be fixed.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s