Showing posts with label participatory medicine. Show all posts
Showing posts with label participatory medicine. Show all posts

Sunday, November 13, 2011

Citizen science health tools

The number of citizen science health and biology projects has been growing in the last few years due to a confluence of factors. Some of these include the plummeting cost of DNA sequencing, the availability of bioinformatics and other web-based data interpretation tools, the possibility of ordering direct-to-consumer blood tests, and having community DIYbio labs for experimentation, education, and support. DIYgenomics has developed a number of boilerplate tools to help in the design and conduct of citizen science health projects:

Study design and organization

Legal/ethics
Finance
Recruitment and marketing

Sunday, January 09, 2011

Citizen science genomics

A group of interested citizen scientists came together to explore how they could make their 23andMe personal genomic data actionable. A small (n=7) non-statistically significant pilot study was conducted looking at polymorphisms (e.g.; typos) in SNPs in the MTHFR gene and their connection to Vitamin B deficiency and high (undesirable) homocysteine levels. Four out of seven participants, though healthy, had high baseline homocysteine levels. For five of the study participants, a regular drugstore multivitamin worked best for reducing homocysteine levels. Overall, homocysteine levels were reduced 19%, commensurate with 23% reductions achieved in traditional clinical trials.

This is an important example for two reasons: the preventive medicine model and the crowdsourced research model.

  1. This study illustrates one approach to the challenge of preventive medicine. Prospective tracking of genomic data + phenotypic data + interventions could help to establish baseline measures of wellness in large populations, shift health management responsibility to individuals, and potentially prevent or delay the clinical onset of conditions.
  2. This study shows the value of crowdsourcing citizen scientists for research studies as they increasingly have access to their health information, may be willing to contribute their data to various studies, and have the interest and motivation to investigate conditions of personal relevance.

Paper: Citizen Science Genomics as a Model for Crowdsourced Preventive Medicine Research, December 23, 2010