Table 1. Research use of customer samples and data.
Decodea | Pathwayb | Navigenicsc | 23andMed before IRB consult | 23andMee,f after IRB consult | |
---|---|---|---|---|---|
Customers who purchase genotyping must also consent to research | No | No | Yes | Yes | No |
Customer samples are used for internal research (e.g., quality control) | N/A | Yes | Yes | Yes | Yes |
Customer samples are used for research for general knowledge | N/A | No | Yes | Yes | Yes |
Customers are required to sign legal waivers covering research participation | N/A | N/A | Yes | Yes | No |
Human subjects research is reviewed by ethics committee or IRB | N/A | N/A | ND | CO | Yes |
CO, human subjects review is required for outside collaborators only; IRB, institutional review board; N/A, not applicable because company does not do research on customer samples; ND, not described on website.
Information drawn from company websites:
deCODEme Genetic Scan Service Agreement and Informed Consent, 2010. http://www.decodeme.com/service-agreement. Accessed 2 August 2010.
Pathway Genomics Privacy Policy, 2012. https://www.pathway.com/about-us/privacy-policy. Accessed 28 April 2012.
Navigenics Informed Consent, Health Compass, 2010. http://www.navigenics.com/visitor/what_we_offer/our_policies/informed_consent/health_compass/. Accessed 2 August 2010.
23andMe. Claim Your Kit. Consent and Legal Agreement, 2010. No longer posted in original form. Version 1.3 (identical to original with additional section). https://www.23andme.com/about/consent/?version=1.3. Accessed 3 August 2010.
23andMe. Consent Document, 2010. https://www.23andme.com/about/consent/. Accessed 3 August 2010.
23andMe. Privacy Statement, 2010. https://www.23andme.com/about/privacy/. Accessed 2 August 2010; 23andMe. Summary of Changes to the 23andMe Privacy Statement, 2010. No longer posted. Accessed 27 June 2010.