Why should I share my genetic information?

April 4, 2010 at 8:15 pm 1 comment

The social networking capabilities on 23andMe’s website offer many benefits to consumers. Among them are:

1) Consumer empowerment

Researchers noticed a shift of health and health-care models from an effort solely undertaken by trained and licensed professionals to an effort assumed by individuals to take action in their own health and wellness (Swan). A genetics-based social network like the one created by 23andMe is one step closer to this kind of a patient-driven healthcare model. Companies like 23andMe give consumers the responsibility for their own health, and they are leading us into what some experts have deemed a “consumer empowerment movement” for healthcare (Lee). 23andMe markets this benefit as a “democratization” of personal genetics and research (23andMe). Many personalized medicine companies and sites, for example the popular site Patients Like Me, also use this kind of model to drive better health (PwC Health Research Institute).

2) Benefits for population genetics research

There also a network effect for more useful databases that is the result of sharing genetic information. Population genetic research needs large databases with many samples in order to create significant associations. 23andMe, by encouraging the sharing of personal genetic information, in turn encourages wider and broader databases. Attracting genetic testing consumers through social networking infrastructures is also an easy, efficient way to scale up population-based research, and can recruit participants that are in a specific ancestry group, geographic group, or have a specific family history of disease (Lee).

3) New connections based on genetic similarity

The relationships that are created by sharing and comparing genetic information are based on a completely new foundation. Sandra Soo-Jin Lee notes that companies like 23andMe are creating “new regimes of biosociality” and reinventing identity based on personal genetic information. Social networks such as the ones offered by 23andMe can also allow users to gain emotional support and social support from other users (Swan).

As personalized medicine becomes more mainstream, I am confident that we will see more health and wellness related companies offering social networking applications as 23andMe is doing now. We are truly living in an open-access era, where everything is shared, even your genetic information.

Works cited in this post
23andMe. 23andMe Democratizes Personal Genetics. News. 9 Sept. 2008. Web. 4 Apr. 2010.
Lee, Sandra, and LaVera Crawley. “Research 2.0: Social Networking and Direct-To-Consumer (DTC) Genomics.” American Journal of Bioethics 9.6 (2009): 35-44. Informa. Web. 4 Apr. 2010.
PwC Health Research Institute. The New Science of Personalized Medicine. Publication. PricewaterhouseCoopers, 17 Dec. 2009. Web. 20 Jan. 2010.
Swan, Melanie. “Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking.” International Journal of Environmental Research and Public Health 6 (2009): 492-525. Print.


Entry filed under: ethics.

It’s a family reunion on the internet Can we really have “recreational” genomics?

1 Comment Add your own

  • 1. dnancestree  |  April 25, 2010 at 11:12 pm

    The idea of consumer empowerment and the notion of democratizing medicine worries me. From my own experiences looking at 23andMe’s explanations for results, there is not nearly enough scientific information to make consumers ready and able to be in such control over their health care. Indeed, the information consumers claim to have about their health based on genetic risk profiles generated by the company cannot match the type of training and education physicians must undergo in medical school and residency. I will be the first to admit that doctors themselves will have to receive more genetics-based education to be able to interpret genomic data. However, I do think they, more than consumers, have a better view of the overall picture and are better positioned to make health-related decisions for their patients.

    I would be interested to hear your thoughts on this. Do you agree that consumer empowerment could pose a threat to a health care system that is already very good?


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