The 1997 film Gattaca explores a world in which social class and upwards mobility is determined by the quality of one\u2019s genetic code. While the film implies a far-off dystopian future, genetic sequencing companies like 23andMe are edging us closer to that reality.<\/p>\n
23andMe provides direct-to-consumer genome tests. Customers receive a kit in the mail to provide the Company with a saliva sample. Customers are then provided ancestry information as well as health information about their genetic predisposition to certain diseases, carrier status, and other genetically-influenced wellness traits [1].<\/p>\n
While ancestry and wellness kits are helpful and entertaining, 23andMe\u2019s core competency is crowd-sourcing and aggregating genomic data. In fact, many liken the Company to \u201cthe Google of personalized healthcare\u201d and there are many instances of the Company allowing business partners (such as pharmaceutical companies) access to its database [2]. With a dataset of 5 million participants, 23andMe\u2019s success is driven by its ability to source content through open innovation [3].<\/p>\n
Management clearly recognizes the value in its crowd-sourcing model and recently launched a study with Pfizer to find genetic correlations among those suffering from depression. The Company solicited data from customers through surveys \u2013 asking them about diseases they\u2019ve been diagnosed with and other key medical data. As one of the only organizations with enough data to yield a statistically significant result, the Company was able to cross-reference over 140,000 instances of self-reported depression and compare the genotypes of those individuals. As a result, Pfizer and 23andMe were able to publish a study linking 15 regions of the human genome to a higher likelihood of depression [4].<\/p>\n
Following the success of its depression study, the Company has doubled-down on open-sourced genetic diagnostics and introduced a conditions page as part of its service package. Focusing first on 18 conditions, the website allows consumers to rank various treatments based on personal experience of efficacy. The goal of the program is to identify why and how certain treatments impact patients differently based on genotype [5]. In February 2018, the Company announced it was launching a study with 100,000 participants to study the efficacy of various diets based on genetic makeup [6]. There have even been reports 23andMe\u2019s data being used in law enforcement matters, such as identifying victims or alleged criminals through DNA tests [7].<\/p>\n
Proponents of the company laud its \u201cdemocratization\u201d of healthcare research and disruption of the \u201cwall of the white coat\u201d [8]. Much of this praise is deserved \u2013 following the lead of companies like Facebook and Instagram, the Company has leveraged society\u2019s increasing willingness to waive privacy rights for targeted content and insights. On a macro-level, the Company has spearheaded genetic research and humanity\u2019s collective understanding of genetic disorders at a rapid pace.<\/p>\n
While management is committed to their open-innovation techniques to aggregate data and identify health trends, this business model is not without its concerns. The Company is walking a tightrope of privacy and commerciality \u2013 while participating in research studies is completely voluntary, customers will never know the various ways in which their personal data could be used and manipulated. The risk of cyber-attack or accidental release of highly confidential material is real, with one such leak and subsequent federal inquiry occurring earlier this year [9].<\/p>\n
Beyond privacy concerns are academic concerns about the quality of the research. Self-administered tests and surveys open the door for errors and bias. Scientists have found wide variability in results across genetic databases, calling into question the accuracy of the entire process [10]. Beyond error risk, many have criticized open-source medical data as irresponsible. For example, after the Company launched its condition page for self-reported efficacy of treatments, many psychologists noted the risk of such information discouraging patients from using treatments they would otherwise be well-suited for [11].<\/p>\n
There is no doubt that 23andMe has leveraged crowd-sourcing in a way that has enabled cutting edge medical research. The Company itself is leading the charge on additional uses of open innovation, a megatrend becoming increasingly relevant in today\u2019s economy. However, there are elements of the Company vision that are concerning and management will have to answer these basic questions \u2013 how should we protect individual privacy, what is the bar for good research, and how can this type of data be used in tandem with existing resources in a responsible manner? (736 words).<\/p>\n
[1] Our Health + Ancestry DNA Service<\/em>. (n.d.). Retrieved from 23andMe: https:\/\/www.23andme.com\/dna-health-ancestry\/<\/a><\/p>\n [2] Grothaus, M. (2005, January 5th). How 23andMe Is Monetizing Your DNA<\/em>. Retrieved from Fast Company: https:\/\/www.fastcompany.com\/3040356\/what-23andme-is-doing-with-all-that-dna<\/p>\n [3] About Us – 23andMe Media Center<\/em>. (2018). Retrieved from 23andMe: https:\/\/mediacenter.23andme.com\/company\/about-us\/<\/p>\n [4] Regalado, A. (2016, August 1st). 23andMe Pulls Off Massive Crowdsourced Depression Study<\/em>. Retrieved from MIT Technology Review: https:\/\/www.technologyreview.com\/s\/602052\/23andme-pulls-off-massive-crowdsourced-depression-study\/<\/p>\n [5] Cohen, J. K. (2018, April 22). 23andMe wants to help users ‘crowdsource’ treatment information for 18 conditions<\/em>. Retrieved from Becker’s Hospital Review: https:\/\/www.beckershospitalreview.com\/population-health\/23andme-wants-to-help-users-crowdsource-treatment-information-for-18-conditions.html<\/p>\n [6] Raphael, R. (2018, February 27). To Get Bigger, 23andMe Is Watching A Hundred Thousand People Diet<\/em>. Retrieved from Fast Company: https:\/\/www.fastcompany.com\/40535016\/to-grow-bigger-23andme-is-watching-a-hundred-thousand-people-diet<\/a><\/p>\n