Opinion: Unconventional Standards

Tailoring ethical oversight to participant-led research

| 4 min read

Register for free to listen to this article
Listen with Speechify
0:00
4:00
Share

WIKIMEDIA, CDCHealth research projects are increasingly being conducted that do not fit the standard picture of biomedical research. On the online crowdsourcing health platform Genomera, for example, a small group of individuals set up a study to test the effects of the intake of different kinds of fats on their ability to do mathematical calculations, while another Genomera group linked genetic variation to the effects of vitamin intake. On the patient social networking site PatientsLikeMe, a group of ALS patients self-experimented with lithium to determine its effects on the progression of their disease and produced systematic results that were published by a leading scientific journal. And large numbers of patients have responded to calls by PatientsLikeMe and other health networking sites to rank therapies or to log their experiences while using approved drugs off-label.

As these examples indicate, those concerned about particular diseases or other aspects of health, or who are interested in medical research itself, are increasingly playing a leading role in research. Such participant-led research (PLR) is gaining popularity and attention, especially as its outcomes have started infiltrating peer-reviewed scientific journals. Advocates of PLR highlight its great untapped potential to contribute to medical knowledge, albeit in unconventional ways: by providing a more bottom-up approach to selecting research questions, by accelerating patient recruitment and completion of clinical trials, and by offering a more transparent research process involving empowered participants. At the same time, critics have voiced concerns about the scientific rigor of such research, including concerns about the reliability of self-reported data and bias resulting from self-selection of ...

Interested in reading more?

Become a Member of

The Scientist Logo
Receive full access to more than 35 years of archives, as well as TS Digest, digital editions of The Scientist, feature stories, and much more!
Already a member? Login Here

Keywords

Meet the Author

  • Effy Vayena

    This person does not yet have a bio.
Share
3D illustration of a gold lipid nanoparticle with pink nucleic acid inside of it. Purple and teal spikes stick out from the lipid bilayer representing polyethylene glycol.
February 2025, Issue 1

A Nanoparticle Delivery System for Gene Therapy

A reimagined lipid vehicle for nucleic acids could overcome the limitations of current vectors.

View this Issue
Enhancing Therapeutic Antibody Discovery with Cross-Platform Workflows

Enhancing Therapeutic Antibody Discovery with Cross-Platform Workflows

sartorius logo
Considerations for Cell-Based Assays in Immuno-Oncology Research

Considerations for Cell-Based Assays in Immuno-Oncology Research

Lonza
An illustration of animal and tree silhouettes.

From Water Bears to Grizzly Bears: Unusual Animal Models

Taconic Biosciences
Sex Differences in Neurological Research

Sex Differences in Neurological Research

bit.bio logo

Products

Photo of a researcher overseeing large scale production processes in a laboratory.

Scaling Lentiviral Vector Manufacturing for Optimal Productivity

Thermo Fisher Logo
An illustration of an mRNA molecule in front of a multicolored background.

Generating High-Quality mRNA for In Vivo Delivery with lipid nanoparticles

Thermo Fisher Logo
Tecan Logo

Tecan introduces Veya: bringing digital, scalable automation to labs worldwide

Explore a Concise Guide to Optimizing Viral Transduction

A Visual Guide to Lentiviral Gene Delivery

Takara Bio