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There are numerous participatory health initiatives underway ranging from light-touch to heavy engagement including social media, mobile health applications, personal health records, consumer genomics, health social networks, and crowdsourced health studies. Crowdsourced health studies are emerging as an important new investigatory tool in a multi-tier research ecosystem that includes quantified self-experimentation, participant-organized studies, and traditional researcher-led clinical trials. Accessing crowdsourced cohorts for health studies is a significant emerging opportunity that could have a positive impact on public health research, particularly as outcomes are shifting to the personalized, preventive medicine of the future.
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Health Futures:Participatory Medicine and
Crowdsourced Research Studies
Melanie Swan Founder
DIYgenomics+1-650-681-9482
@DIYgenomics www.DIYgenomics.org
Media X 2012 Seminar
May 16, 2012, Stanford CA
Slides: http://slideshare.net/LaBlogga
May 16, 2012DIYgenomics.org 2
About Melanie Swan
Founder: DIYgenomics Current projects: MelanieSwan.com Education: MBA Finance, Wharton; BA
French/Economics, Georgetown University Work experience: Fidelity, JP Morgan, iPass,
RHK/Ovum, Arthur Andersen Singularity University Instructor, IEET
Affiliate Scholar, sample publications:
Source: http://melanieswan.com/publications.htm
Swan, M. Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem. J Med Internet Res 2012, Mar;14(2):e46.
Swan, M. Scaling crowdsourced health studies: the emergence of a new form of contract research organization. Personalized Medicine 2012, Mar;9(2):223-234.
Swan, M., Hathaway, K., Hogg, C., McCauley, R., Vollrath, A. Citizen science genomics as a model for crowdsourced preventive medicine research. J Participat Med. 2010, Dec 23; 2:e20.
Swan, M. Multigenic Condition Risk Assessment in Direct-to-Consumer Genomic Services. Genet. Med. 2010, May;12(5):279-88.
Swan, M. Translational antiaging research. Rejuvenation Res. 2010, Feb;13(1):115-7. Swan, M. Emerging patient-driven health care models: an examination of health social networks,
consumer personalized medicine and quantified self-tracking. Int. J. Environ. Res. Public Health 2009, 2, 492-525.
May 16, 2012DIYgenomics.org
Participatory health summary
The right public health solution at the right time
Biology is the transistor of the 21st century
Proliferation of involvement in participatory medicine Light engagement: social media Heavy engagement: crowdsourced health research studies
Participatory health is integral to realizing the personalized, preventive medicine of the future
3
Image credit: http://sciencephoto.com
May 16, 2012DIYgenomics.org
Top 10 list of participatory health initiatives
Personal health records
Microbiomics
Whole human genome
sequencing
Health social networks
Personalized genomics
Crowdsourced health studies Blood tests 2.0
Automated self-tracking devices
Health advisor
Social media
2020+2010 2015
Image credit: http://www.dreamstime.com
Smartphone health apps
4
May 16, 2012DIYgenomics.org 55
Image credit: Natasha Vita-More, Primo Posthuman
Agenda
Introduction: context for participatory health Participatory health initiatives
Social media, smartphone health apps, PHRs Personalized genomics Crowdsourced studies
Health 2050: next-generation participatory health and preventive medicine
May 16, 2012DIYgenomics.org 6
Information transmission eras
Painting, scrolls Press, Transistor DNA
Analog Digital Life code ?
?
2000-21001455&1950-200017,300 years ago 2100+
May 16, 2012DIYgenomics.org 7
Information processing eras
Expert syst, CYC NLP, HTM, NCC Google, Watson
Enumeration Biomimicry Big data ?
?
2000s+1990s+1950s 2100+
May 16, 2012DIYgenomics.org
Big data: personal health informatics
8Academic papers re: integrated health data streams: Auffray C, et al. Looking back at genomic medicine in 2011. Genome Med. 2012 Jan 30;4(1):9.
Chen R et al. Personal omics profiling reveals dynamic molecular and medical phenotypes. Cell. 2012 Mar 16;148(6):1293-307.
DNA: SNP mutations
Microbiomics
Proteomics
RNA expression profiling
Epigenetics
Health 2.0:Personal health
informaticsDNA: Structural
variation
Metabolomics
May 16, 2012DIYgenomics.org
Big data: collective intelligence computing
9
Crowdsourcing
Quantified self-tracking
DIYbio labs
Consumer blood tests
Citizen science
Concierge research
Consumer genomics
Health 2.0:Crowdsourced
health computing
Ambient mental performance optimization
Continuous sampling
“Individuals are computing nodes processing health information”
May 16, 2012DIYgenomics.org 10
Rising worldwide health care costs
Source: http://www.kff.org/insurance/snapshot/OECD042111.cfm
May 16, 2012DIYgenomics.org
Woeful state of global public health systems
Rising health care costs
Populations: aging and less-healthyCDC: US 34% obese today, 42% by 20301
Anticipated physician shortages
Cost per new drug: $1.5 billionNew drug applications: 23 in 2011 vs. 45 in 1996
Upcoming period of care rationing?
11
Image credit: http://www.boomertownsquare.com
1Source: http://today.msnbc.msn.com/id/47337275/
May 16, 2012DIYgenomics.org 1212
Image credit: Natasha Vita-More, Primo Posthuman
Agenda
Introduction: context for participatory health Participatory health initiatives
Social media, smartphone health apps, PHRs Personalized genomics Crowdsourced studies
Health 2050: next-generation participatory health and preventive medicine
May 16, 2012DIYgenomics.org 13
Participatory health definition
Health 2.0, Medicine 2.0, eHealth, participatory health (2008) “Use of a specific set of Web [2.0] tools (blogs, Podcasts, tagging, search, wikis, [health
social networks], etc.) by actors in health care including doctors, patients, and scientists, using principles of…in order to personalize health care, collaborate, and promote health education” 1
Society for Participatory Medicine (2010) “Participatory Medicine is a movement in which networked patients shift from being
mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners”2
1Source: http://en.wikipedia.org/wiki/Medicine_2.0#cite_note-jmir.org-32Source: http://e-patients.net/archives/2010/04/a-patient-centric-definition-of-participatory-medicine.html
May 16, 2012DIYgenomics.org 14
Participatory health activities
(Light) Level of Engagement (Heavy)
Social media
Mobile health apps
PHRs (personal
health records)
Consumer genomics
Health social networks and crowdsourced
health studies
Image credit: Getty Images
May 16, 2012DIYgenomics.org
Web 2.0 in the health context Blogs, twitter, facebook, wikis, search, google+, video
15
Health 2.0 social media
Image credit: http://www.xojane.com
May 16, 2012DIYgenomics.org
Social media increases responsibility-taking
27% of US internet users track health data online1
41% of European physicians believe social media will play an increasingly important role in shaping patient management and treatment2
161Source: http://www.pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx2Source: http://www.worldofhealthit.org/sessionhandouts/documents/PS34-1-DeniseSilber.pdf
Image credit: http://www.3gdoctor.comImage credit: http://www.americanwell.com
May 16, 2012DIYgenomics.org
Smartphone as personal doctor
Mobile is the platform US: more cell phones (328 m) than people (315 m)1
Worldwide smartphone users One billion+ by 20132
81% physicians using smartphones 20123
Explosive growth in application (app) downloads 5 billion in 2010 versus 300 million in 20094
Health-related apps: 7,0004
Studies: thousands recruited in months2
Intimate continuous interaction platform Phone loss noticed within 5 minutes vs. 1 hour for wallet loss Kids chat with Siri as virtual friend
17
1Kang C. Number of cell phones exceeds US population. Washington Post. October 11, 2011.2Dufau S. Smart phone, smart science: how the use of smartphones can revolutionize research in cognitive science. PLoS One. 2011.3Kiser K. 25 ways to use your smartphone. Physicians share their favorite uses and apps. Minn Med. 2011. 4Boulos MN. How smartphones are changing the face of mobile and participatory healthcare. Biomed Eng Online. 2011.
Image credit: http://www.psfk.com
Image credit: tehgaygeek.blogspot.com
May 16, 2012DIYgenomics.org
PHRs (personal health records)
Patient-administered medical records
PHR use is growing (Deloitte) 11% PHR use in 2011, +3% from 2008 Aetna 1.5 million users (Sep 2011)
Improved health outcomes PHR users 68% better at following up on recommended
care Empowers health self-management, more active role
18
Image credit: http://mymedsphr.com
Image credit: http://www.mobihealthnews.com
May 16, 2012DIYgenomics.org 19
Health social networks and collaboration
Source: Extended from Swan, M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int. J. Environ. Res. Public Health 2009, 2, 492-525.
Health collaboration communities
Health social networks
(global & local)
May 16, 2012DIYgenomics.org 2020
Image credit: Natasha Vita-More, Primo Posthuman
Agenda
Introduction: context for participatory health Participatory health initiatives
Social media, smartphone health apps, PHRs Personalized genomics Crowdsourced studies
Health 2050: next-generation participatory health and preventive medicine
May 16, 2012DIYgenomics.org
Personalized genomics definition
Using genetic sequencing profiles of individuals in health and wellness decisions
Consumer cost = $99 International availability, 100,000+ subscribers
Image credit: http://123RF.com
Example: rs1801133 AG AA, AG, GG
Allele, variant, SNP (single nucleotide polymorphism); “typo” in red; normal in green
Example: rs7412 CT CC, CT, TT
May 16, 2012DIYgenomics.org 22
Numerous useful applications of genomics
1. Established Ancestry Carrier status Identity (paternity, forensics)
2. Maturing Health condition risk1
Pharmaceutical response2
3. Novel Athletic performance capability OTC product response Environment/toxin processing
4. Farther future Predictive wellness profiling: aging, cancer, immune response
Image credit: http://bit.ly/fovpJc
1Source: Swan M. Multigenic condition risk assessment in direct-to-consumer genomic services. Genet Med. 2010 May;12(5):279-88.2Source: http://www.fda.gov/Drugs/ScienceResearch/ResearchAreas/Pharmacogenetics/ucm083378.htm
May 16, 2012DIYgenomics.org 23
Direct-to-consumer genomics: 23andMe
1,000,000 SNPs scanned and mapped to 237 conditions
Source: http://www.23andme.com; open source genomes http://www.snpedia.com/index.php/Genomes
May 16, 2012DIYgenomics.org 24
23andMe colorectal cancer marker
Source: http://www.23andme.com
May 16, 2012DIYgenomics.org 25
23andMe colorectal cancer marker
Source: http://www.23andme.com
May 16, 2012DIYgenomics.org
Pathway Genomics drug response
Source: http://www.pathway.com26
May 16, 2012DIYgenomics.org
Consumer genomics comparison scorecard
Which service to buy?
*Physician prescription required
Consumer genomic service
# Cond-itions
Cost Report Data access
Visible research quality1
Updates
49 $2,000 + + 237 $99 +
40 $999 71 $299 15 public
study
n/a public study
1Conditions, genes, variants, underlying research references, and methodology white paper(s) available on public website
*
*
May 16, 2012DIYgenomics.org 28
Open-source mobile apps (5,000+ downloads)
Health condition, drug response, athletic performance capability
Private 23andMe data upload
Android
iPhone
Android development: Michael Kolb, Lawrence S. Wong, Laura Klemme, Melanie SwaniOS development: Ted Odet, Greg Smith, Laura Klemme, Melanie Swan
“genomics”4,000+ downloads
“genomics”1,000+ downloads
T T T
T T T
T C C
May 16, 2012DIYgenomics.org 29
Example: what to do with your data
Check if you have the risk allele for the BDNF gene Determine related SNP/rsID#, rs6265 (neuroplasticity) Search genomic data for rs6265 genotype (e.g., CC) Determine the risk allele (which letter?) (e.g.; G1) Current genomics search resources
PharmGKB, dbSNP, GWAS catalog, SNPedia
Source: http://www.wired.com/wiredscience/2009/10/genetically-bad-driving1Ribeiro, L. et. Al., The brain-derived neurotrophic factor rs6265 (Val66Met) polymorphism and depression in Mexican-Americans. Cellular,
Molecular and Developmental Neuroscience. May 8, 2007.
May 16, 2012DIYgenomics.org 30
Finding your BDNF data, variant rs6265
Consumer genomic services genotype 1 million variants but only map a few up to the annotation browser
May 16, 2012DIYgenomics.org
Athletic performance
Source: http://www.genome.duke.edu/education/seminars/journal-club/documents/Assael_2009.pdf 31
May 16, 2012DIYgenomics.org
Personal microbiomics
32
Image credit: Grice EA et al, Nat Rev Microbiol, 2011, Figure 3
Skin microbiome ecosystem distribution
Image credits: my.microbes.eu
My.microbes.eu gut enterotype analysis
Disease risk, drug response, and nutrient generation
Enterotype affiliation and nutrients1
1. Bacteroides (biotin synthesis)
2. Prevotella (thiamine synthesis)
3. Ruminococcus (folate synthesis)
1Source: Arumugam M et al. Enterotypes of the human gut microbiome. Nature. 2011 May 12;473(7346):174-80.
May 16, 2012DIYgenomics.org 3333
Image credit: Natasha Vita-More, Primo Posthuman
Agenda
Introduction: context for participatory health Participatory health initiatives
Social media, smartphone health apps, PHRs Personalized genomics Crowdsourced studies
Health 2050: next-generation participatory health and preventive medicine
May 16, 2012DIYgenomics.org
Crowdsourced health studies
Definition: Research studies that derive participants and data from a
large group of people through an open call
Researcher-organized PatientsLikeMe 23andMe
Participant-organized Quantified Self Genomera DIYgenomics
34Source: Swan, M. Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem. J Med Internet Res 2012, Mar;14(2):e46.
Image credit: http://www.noupe.com
May 16, 2012DIYgenomics.org
Researcher-organized crowdsourced studies
PatientsLikeMe studies (~50 papers, 150,000 community members, 1000 conditions)
ALS (amyotrophic lateral sclerosis); patient-run lithium study
Pharmaceutical-related studies: off-label use, adherence quantification, patient sentiment
User experience in health social networks 23andMe genome association studies (~10 papers,
>100,000 community members)
Technique: replication and novel discovery Large-scale (3,426 cases/29,624 controls) Parkinson’s
study; phenotype-genotype linkage (20,000 responses) Non-disease condition (trait) associations (hair color,
freckling, smell detection, and sneeze reflex)
35Source: Swan, M. Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem. J Med Internet Res 2012, Mar;14(2):e46.
May 16, 2012DIYgenomics.org
Quantified self
Goal: personalized knowledge through quantified self-tracking
Format: monthly ‘show n tell’ meetups Outcome: optimality and improvement
Example: personalized interventions for depression, low energy, sleep quality
36
Image credit: http://www.nationalpost.com Image credit: Quantified Self
Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted.
May 16, 2012DIYgenomics.org 37
Genomera‘eBay of health studies’
May 2012: 600+ community members, 25 studies with 10-65 enrollees
Site access through www.DIYgenomics.org
May 16, 2012DIYgenomics.org 38
DIYgenomics
Goal: preventive medicine Realize preventive medicine by establishing baseline markers
of wellness and pre-clinical interventions
Generalized hypothesis One or more polymorphisms may result in out-of-bounds
baseline levels of phenotypic markers. These levels may be improved through personalized intervention.
Genotype Phenotype Intervention Outcome+ + =
Source: Swan, M., Hathaway, K., Hogg, C., McCauley, R., Vollrath, A. Citizen science genomics as a model for crowdsourced preventive medicine research. J Participat Med. 2010, Dec 23; 2:e20.
May 16, 2012DIYgenomics.org 39
DIYgenomics participant-organized studies 7 studies in open enrollment (vitamin deficiency, aging, and
mental performance)
Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted.
May 16, 2012DIYgenomics.org
Results from DIYgenomics Vitamin B pilot
40
2. Homocysteine levels
DIYgenomics MTHFR Vitamin B deficiency study1
1. Genotype profiles
Baseline LMF BaselineCentrum
umol/l
C + LMF
1Source: Swan, M., Hathaway, K., Hogg, C., McCauley, R., Vollrath, A. Citizen science genomics as a model for crowdsourced preventive medicine research. J Participat Med. 2010 Dec 23; 2:e20. Results are not statistically significant and intended as a pilot demonstration
Blood Test #
May 16, 2012DIYgenomics.org
New DIYgenomics studies
41Source: DIYgenomics
Genomics and Caffeine Sleep
StudyInvestigate a potential genetic link with sleep
quality in healthy individuals and caffeine consumption, using the
myZEO tracker and personalized interventions
Investigate diabetes prevention in healthy
individuals with glucometer tracking, SNP review, hemoglobin, and cholesterol blood tests
Social Intelligence Genomics and Empathy Study
Diabetes Quantified-Self Tracking Study
Determine if there is a link between genetics
and altruism, empathy, and optimism, including with the use of a SIRI 2.0 personal virtual coach intervention
May 16, 2012DIYgenomics.org 4242
Image credit: Natasha Vita-More, Primo Posthuman
Agenda
Introduction: context for participatory health Participatory health initiatives
Social media, smartphone health apps, PHRs Personalized genomics Crowdsourced studies
Health 2050: next-generation participatory health and preventive medicine Practical Philosophical
May 16, 2012DIYgenomics.org 43
Role of participatory health: future medicine
Individual
2. Peer collaboration and health advisors
Health social networks, crowdsourced studies, health advisors, wellness coaches, preventive care plans,
boutique physicians, genetics coaches, aestheticians, medical tourism
3. Public health systemDeep expertise of traditional health system
for disease and trauma treatment
1. Continuous health information climate Automated digital health monitoring, self-tracking devices, and mobile apps providing personalized recommendations
Source: Extended from Swan, M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int. J. Environ. Res. Public Health 2009, 2, 492-525.
May 16, 2012DIYgenomics.org
New health frontier: mental performance optimization
44
‘Siri 2.0’ Personal Virtual Coach from DIYgenomics
Sources: http://cbits.northwestern.edu and http://quantifiedself.com/2009/03/a-few-weeks-ago-i
Source: DIYgenomics Social Intelligence Studyhttp://diygenomics.pbworks.com/w/page/48946791/social_intelligence
PTSD App Mood Management Apps from Mobilyze and M. Morris
Source: http://www.ptsd.va.gov/public/pages/
ptsdcoach.asp
May 16, 2012DIYgenomics.org 45
Professionalizing participatory health: innovating the research model
Institutional PI (principal
investigator)
Traditional Research Model Participatory Research ModelCRO 2.0 (contract research organization
Research subjects
Citizen scientists
Investigators = Participants
Institutional Review Board
(IRB)
IRBs, FAQs, Citizen ethicists
Grant funding
Journal publication
Self publishing
Patient advocacy
groups
Research foundations
Social VC
Crowd-sourcing
Source: Swan, M. Scaling crowdsourced health studies: the emergence of a new form of contract research organization. Personalized Medicine 2012, Mar;9(2):223-234.
May 16, 2012DIYgenomics.org 46
More consumer assays are needed
Low-cost home-administered self-read tests:1. Blood/saliva/urine tests 2.0 (Cholesterol, Vitamins A-E, Folate,
Creatinine, eGFR, Cortisol, Calcium, Iron; Hormones Estrogen, Progesterone, Testosterone, Estradiol; Immune system: CD4, CD8/CD28 ratio, IL-1, IL-6)
2. Daily microbiome profiling assay (skin, oral cavity, gut)
3. Consumer epigenetic test
4. Consumer RNA expression test
OrSense continuous non-invasive glucose monitoring
Cholestech LDX home cholesterol test
ZRT Labs dried blood spot tests
Source: http://futurememes.blogspot.com/2011/10/blood-tests-20-advances-with-dried.html
May 16, 2012DIYgenomics.org 47
Philosophically expanded concept of health
Source: Extended from Swan, M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int. J. Environ. Res. Public Health 2009, 2, 492-525, Figure 1.
A new model of health and health care
May 16, 2012DIYgenomics.org 48
Ontological shift
Old thinking:
My health is the responsibility of my physician
New thinking:
My health is my responsibility… and I have the tools to make managing it easy
Image credit: http://efx3.com
Source: Swan, M. Biotechnicity 2.0: Computation-enabled Philosophical Advance in the Epistemology of Human Biology and the Ontology of Bioidentity. May 2012. Conference presentation: Symposium on Computational Philosophy, AISB/IACAP World Congress (in Honor of Alan Turing, 1912-1954), July 2-6, 2012, University of Birmingham, Birmingham, UK.
May 16, 2012DIYgenomics.org 49
Professionalizing participatory health: Philosophical validation
Towards an epistemology of citizen science Provide a structure and context for participant-derived health
knowledge
Q1: Are new kinds of knowledge are being formed through group collaborations such as wikipedia and health social networks?
Q2: How to characterize the knowledge generated by traditional medicine, self-experimentation, and health collaboration communities?
Image credit: http://inkingrey.com
Source: Swan, M. Biotechnicity 2.0: Computation-enabled Philosophical Advance in the Epistemology of Human Biology and the Ontology of Bioidentity. May 2012. Conference presentation: Symposium on Computational Philosophy, AISB/IACAP World Congress (in Honor of Alan Turing, 1912-1954), July 2-6, 2012, University of Birmingham, Birmingham, UK.
May 16, 2012DIYgenomics.org
Top 10 list of participatory health initiatives
Personal health records
Microbiomics
Whole human genome
sequencing
Health social networks
Personalized genomics
Crowdsourced health studies Blood tests 2.0
Automated self-tracking devices
Health advisor
Social media
2020+2010 2015
Image credit: http://www.dreamstime.com
Smartphone health apps
50
May 16, 2012DIYgenomics.org
But wait…
51
Image credit: http://www.sldesigns.com
Potential drawbacks of participatory health
• Health hobbyist niche, not mainstream
• Perceptions of health: negative, deterministic
• Anemic participation in health collaboration communities
• Financial incentives required for self health monitoring
• Unclear how to incorporate into public health systems
May 16, 2012DIYgenomics.org
Participatory health summary
The right public health solution at the right time
Biology is the transistor of the 21st century
Proliferation of involvement in participatory medicine Light engagement: social media Heavy engagement: crowdsourced health research studies
Participatory health is integral to realizing the personalized, preventive medicine of the future
52
Image credit: http://sciencephoto.com
Thank you!
Melanie SwanFounder
DIYgenomics+1-650-681-9482
@[email protected]: http://slideshare.net/LaBloggaCreative Commons 3.0 license
Collaborators:
Lorenzo Albanello
Janet Chang
Cindy Chen
John Furber
Hong Guo
Kristina Hathaway
Laura Klemme
Priya Kshirsagar
Lucymarie Mantese
Raymond McCauley
Personal genome appsCrowd-sourced clinical trials
Marat Nepomnyashy
Ted Odet
Roland Parnaso
Thomas Pickard
William Reinhardt
Greg Smith
Aaron Vollrath
Lawrence S. Wong
International collaborations:
JST and Rikengenesis
Takashi Kido
Minae Kawashima
Jin Yamanaka
University Hospitals of Geneva
Louis Nahum
Armin Schnider
May 16, 2012DIYgenomics.org 54
Study design template: Vitamin B deficiency
Source: http://diygenomics.pbworks.comhttp://diygenomics.pbworks.com/w/file/36469280/DIYgenomics+study+design+template+blank.doc
CyanocobalaminImage credit: http://wikimedia.org
May 16, 2012DIYgenomics.org 55
DIYgenomics memory study
Image credit: http://bit.ly/g2DIcW
Source: http://genomera.com/studies/aging-telomere-length-and-telomerase-activation-therapy
Goal: 100 member cohort •Genotype: COMT, DRD2, SLC6A3 (~5 SNPs) (neurotransmitter modulation)•Phenotype: memory test (20-25 minutes)•Background questionnaire
May 16, 2012DIYgenomics.org
DIYgenomics Retin-A skin cream study
Genetic profiling can predict Retin-A side-effects?
56Source: http://genomera.com/studies/retin-a-wonder-cream-for-acne-and-wrinkles-is-there-a-genomic-link
May 16, 2012DIYgenomics.org
DIYgenomics TA-65 aging study
Telomerase genes, telomere length, and intervention Telomere-lengthening and immune system benefits (Harley
CB et al, Rejuvenation Res, 2011, de Jesus BB et al, Aging Cell, 2011)
57Source: http://genomera.com/studies/aging-telomere-length-and-telomerase-activation-therapy
May 16, 2012DIYgenomics.org
Quantified self study examples
Data visualization: one year of food consumption1
Butter Mind study2
Improved arithmetic speed for 45 randomized individuals eating 2 ounces (56.7 grams) of butter per day
Health and mental performance3
Reduced early awakening by avoiding breakfast and spending more time during the day standing
Improved mood by seeing faces Lost weight by drinking sugar water
58
Images credit: Lauren Manning
Image credit: Quantified Self
1Source: http://flowingdata.com/2011/06/29/a-year-of-food-consumption-visualized2Source: http://quantifiedself.com/2011/01/results-of-the-buttermind-experiment3Source: Roberts S. The unreasonable effectiveness of my self-experimentation. Med Hypotheses. 2010 Dec;75(6):482-9.
May 16, 2012DIYgenomics.org
Markets: Research: one-off genotyping Classroom education
How it works Select SNPs of interest Order kit ($20/kit (minimum 4)) Go through DNA collection, extraction,
PCR amplification steps Send results to lab for sequencing Check online for results
59
DIY genotyping kits: Cofactor Bio
1Source: http://cofactorbio.com/education
May 16, 2012DIYgenomics.org
Biotechnicity and computational philosophy
60
Computational tools of health discovery •Hardware and software devices and algorithms: quantitative health data streams, health-related smartphone applications, personal electronic health records, quantified self-tracking devices •Crowdsourced human computing networks: crowdsourced disease prediction, health social networks, quantified self n=1 health self-experimentation, crowdsourced health research studies, DIYbio labs
Epistemic advance: new knowledge generation•Content: New data streams, larger data sets, more granular data, higher order magnitude science•Process: New algorithms and new models
Metaphysical shift: new ways of being •Meaning: What do the new definitions of health mean?•Identity: Sense of self and group identity, biocitizenry
Source: Swan, M. Biotechnicity 2.0: Computation-enabled Philosophical Advance in the Epistemology of Human Biology and the Ontology of Bioidentity. 2012. Submitted.
Image credit: http://stemcellresources.org
May 16, 2012DIYgenomics.org
Standard study protocol – methodology
Collect relevant genomic SNP data Literature search for polymorphisms associated with condition
Measure relevant phenotypes before and after (typical study duration = 1 month) Quantitative measures: blood test, self-tracking device data Qualitative measures: user surveys
Intervention (n=100 to 1000) Group A: nothing (control) Group B: intervention 1 (experimental group 1) Group C: intervention 2 (experimental group 2)
Advisors: confirm protocol design with two independent academics or professionals in the field
61
Genotype Phenotype Intervention Outcome+ + =
Image credit: http://sciencemag.org
Source: DIYgenomics