New Fields of Research Defined by Open Science Visionaries

The purpose of an open-science non-profit research startup like DIYgenomics is research innovation.

The value is in being able to propose a unique and visionary research agenda of questions that are forward-looking and not the focus or interest of the institutional research industry.

Research innovation falls into two tiers:

First is preventive medicine questions, ‘medicine that matters to me’ (e.g.; small groups or individuals), and non-pathologies.

More importantly, the second tier is defining completely new fields of research such as athletic performance genomics, social intelligence genomics, cognitive performance genomics, and DIYneuroscience, and making progress on widespread philosophical and societal problems such as the destigmatization of physical and mental health issues, and the reduction of discrimination as a broad social problem.

DIY open-science, crowdsourced health social networks, and community biohacking labs are the early-stage startup/venture capital arm of the expanding preventive medicine ecosystem of health services, and are able to surface projects of interest that can then be pursued at the institutional level as relevant.

Memory and empathy studies launch on crowdsourced health platform!

Two new health studies organized by DIYgenomics and collaborators have recently launched on the crowdsourcing platform Genomera. One is a memory study: Dopamine Genes and Rapid Reality Adaptation in Thinking and the other is an empathy study: Social Intelligence Genomics & Empathy-Building.

The Genomera platform boasts over 700 community members who are interested in participating in studies. While several of the approximately 30 listed studies investigate genetics as a related component of health, it is not necessary to have data from 23andMe or other consumer genomics services to join the health collaboration community and participate in studies. There are already 40 participants in the memory study and almost 20 in the empathy study.

The objective of the memory study is to see if genetic variants related to dopamine processing in the brain impact the processing of memories. The study is being conducted in conjunction with leading researchers at the Center of Cognitive Neurorehabilitation in Geneva Switzerland. The participation requirements are to complete an online Memory Filtering Task which takes approximately 40 minutes and a short Demographic Survey.

The objective of the empathy study is to confirm and extend research linking genetic profile and social intelligence, specifically whether individuals with certain genetic profiles may have a greater natural capacity for optimism and empathy, extraversion, and altruism. The participation requirement is to complete two short standardized online surveys for empathy quotient and other personality attributes. In addition, there is an optionally available Personal Virtual Coach app for empathy-building, a sort of SIRI 2.0 for mental performance optimization.

Open science Wikis

Wikis are a great tool for facilitating open science through ease-of-use and transparency in the conduct of research studies. Wikis allow real-time updating, archived recording of changes over time, and the general ease of information flow in the digital era. In the health arena, wikis are being used to empower health-self management. One example is the DIYgenomics wiki which is used to operate crowdsourced health research studies. Two key activities are open deliberation regarding study protocols and data results.

1) Open Study Protocols – wikis can be used to post and continuously update study design protocols. Study advisors, ethicists, potential funders, organizers, participants, press, and any other interested parties may review and give input in an open format. Two current examples of study protocols under development are a Quantified Self-tracking Diabetes study and a Social Genomics study (e.g.; linking personal genomic profiles to empathy, altruism, optimism).

2) Open Data Results – wikis can be used for study participants to log and discuss data results. For example, in one study looking at genomic mutation and Vitamin B deficiency, all data was tracked via wiki. Study participants were asked to post their genomic data and blood test results to the study wiki page as they came arrived. Separate validations were carried out from the underlying PDF copies of the lab test results, but anyone could follow the ongoing study results in real-time from the wiki edits. Later, the data collected in the wiki tables was easy to convert to the form needed for scientific journal publication.

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

• Study design template

Legal/ethics

• Sample informed consent form

Finance

• Study budget template

Recruitment and marketing

• Study flyers: multiple studies, aging study, vitamin deficiency study
• Conference poster
• Participant recruiting plan (per Genomera)
  

Health 2.0 business models

Health 2.0 is about re-envisioning every aspect of health and health care. New business models are starting to develop to support this innovation ecology. First, accompanying the new paradigm of community research (peer cohort studies à la Patients Like Me (lithium) and DIYgenomics (MTHFR mutation/Vitamin B-12 deficiency), could be social venture finance, corporate sponsorship from supplement companies and other remedy vendors, crowdsourced finance (i.e.; Kickstarter), and philanthropist contributions. Second, the traditional venture capital model is already being applied to health 2.o startup companies, including through organizations such as the Health 2.0 Accelerator. Third, whole new industries may sprout from the nascent efforts of health advisors and wellness coaches. The health advisor is the analog to the financial advisor or mortgage broker, able to integrate a client's health data streams, needs, and interests with available offerings, across a spectrum of economic models: insurance reimbursable, HSA dollars, and direct out-of-pocket spending.