DNA_3DThe concept of Citizen Science has attracted a lot of attention over the past few years. But most of us scientists still need to understand that interest in science and curiosity can lead to extremely valuables observations and discoveries regardless of the person’s professional background. And a bit more selfishly, we should also realize that strong interest from the general public often turns out to be beneficial, for instance by providing volunteering time, public support for more funding, and better exposure of the work.

A great story by David Epstein, published by ProPublica and This American Life on the 15th of January 2016, tells us the story of Jill Viles, a muscular dystrophy patient who went undiagnosed  for years and who finally took things into her owns hands. She came across descriptions of patients with the same symptoms and phenotype than her in medical books and came to the conclusion that she had a rare type of muscular dystrophy called Emery-Dreifuss. Later she also found that she was also suffering from partial lipodystrophy. Not only that, she then found that Priscilla Lopes-Schliep, a world class athlete, had a related condition to her by looking at the specific features of the athlete exceptionally muscular body. It was then confirmed that similar (but different) mutations on the lamin gene cause both Jill’s and Priscilla’s body features.

Priscilla Lopes-Schliep and Jill Viles

Priscilla Lopes-Schliep (left) and Jill Viles (right), have found to have very closely related conditions. Credit for photograph to Jill Viles

Thankfully, more and more researchers are recognizing the importance of citizen participation to advance scientific research. And although amateur scientists have have been collected note about bird sightings or tracking the stars in the night sky for very long times, now they can directly engage with professional researchers and engage in major scientific project through online platforms.

Matchmaker Exchange

Matchmaker Exchange

In 2013, a group of scientists created a platform called Matchmaker Exchange to help find the genetic causes for patients with rare diseases. It connects several databases of phenotypes and genotypes together and guides patients towards the right resources to submit their genotype with the hope of getting closer to a diagnostic. This platforms and others give a stronger voice to patients and their families, recognizing that they have a role to play in our collective fight against diseases.


As for us, it is not always clear how the general public could participate in more technical research, when research is centred around experimental work that require equipment and know-how. But even then, we are keeping our eyes open for opportunities. The rise of DIY science illustrated by the growth of bio-hacking spaces all over the world tells me that we might soon get more input from non-scientist that we currently think is possible.


Leave a Reply

Your email address will not be published. Required fields are marked *


1 2 3
October 15th, 2018

Welcome to Gilai and Laise

July 30th, 2018

New review published: Mucins as multifunctional building blocks of biomaterials

July 9th, 2018

New publication: Muco-silk, an mucoadhesive engineered silk

June 26th, 2018

Thank you to the master and bachelor students of Spring 2018!!

March 7th, 2018

New mucus engineering publication from the group.

January 26th, 2018

Welcome to three new students!

August 21st, 2017

iGEM Stockholm 2017 engineering mucus – Update with gold!

August 18th, 2017

Welcome to Ulrike Schimpf and Cristina Chircov!

July 13th, 2017

Mucin-inspired lubrication on hydrophobic surfaces

March 27th, 2017

Get funded in Sweden. A guide for starting researchers.