The controversy over fake news revealed that Facebook discovers a lot about the preferences of its patrons by tracking how they interact with content (1). This arrangement is mutually beneficial because sophisticated programs deliver to consumers what they like and keeps them engaged. The intersections of new technologies with established businesses can be disruptive and it is clear Facebook has changed the ways news organizations interact with many of their consumers.
What else will Facebook change? Perhaps the expanding body of personal genetic data will be deeply intertwined with social media. Many individuals have had genetic profile testing performed and this steadily growing pool is a potential database treasure trove waiting to be mined by researchers – if they can get access. A program to enroll volunteers into a crowdsourced genetics effort has already attracted thousands of participants (2) and the organizers speculated that in the future participants who approve will be able to link their genetic data to their Facebook accounts (2). This combination would potentially give researchers access to critical information they simply cannot deduce from DNA sequences or markers alone.
For all its power, DNA sequence data cannot always predict someone’s medical future or their particular traits (3) prompting calls to enable researchers to combine genetic data with clinical records (4). Merging genetic data with Facebook and its massive cache of continually updating personal facts and details might create an invaluable data resource. Privacy concerns and other issues may induce organizations like medical health care providers to ensure their databases remain restricted. However, individuals possessing their personal genetic profiles or genomic sequences will be entirely free to give away the information.
The Genetic Information Nondiscrimination Act of 2008 prohibits adverse actions by employers or health insurers on the basis of DNA information (5). While this benefits the U.S. consumer of genetic test data, in 47 states these restrictions do not apply to life, disability and long-term care insurance. These limitations and concerns about possible repercussions have led some to avoid undergoing genetic testing (6). Unfortunately, it may become more difficult to evade genetic testing or ensure the results remain confidential in the future (6).
Genetic data sharing offers potentially great benefits. However, persons not harboring any genes linked to risk for future disease or infirmity and inclined to share their data may still wish to consider if they understand fully what they are doing. New predictive disease markers are precisely what the database miners are seeking. While quite a number of individuals have volunteered to participate in genomics research (2), it is unclear how widely this trend will be embraced.
The norms and rules governing genetic information sharing on social media are evolving. Facebook users have been participating in marketing research programs (7) and it is already clear that the data these efforts yield can be illuminating. And lucrative. But the implications are amazing. Let’s say out of concerns about privacy and obtaining disability or long-term care insurance in the future, you decline to provide personal genetic data to any social media. In fact, you refuse to ever have any genetic testing done at all. Will that decision protect you from being denied coverage or paying high-risk premiums? Maybe not depending on how research in areas such as Alzheimer’s disease risk factors turns out.
Studies of Catholic sisters revealed that autobiographies written as women first entered religious life strongly predicted the chance for developing Alzheimer’s disease decades later. Nuns writing more complex essays with greater idea densities were less likely to develop Alzheimer’s disease and those expressing more positive emotions had significantly longer lives (8). Educational attainment, health habits and physical activity levels all seem to impact the probability of falling victim to Alzheimer’s dementia. Efforts to identify and evaluate the behavioral and environmental factors leading to dementia have been underway for a while. Perhaps a legion of Facebook volunteers will play a key role in reliably predicting those most at risk to be stricken with Alzheimer’s disease. When it comes to such feats, your Facebook data trail might one day be more powerful than any genetic profile. And what it reveals might be interesting to a wide variety of third parties.
(1) M. Casey and O. Luckett. 2016. Here’s How to Fix Facebook’s Fake News. The Daily Beast, 18 November 2016. http://www.thedailybeast.com/articles/2016/11/19/here-s-how-to-fix-facebook-s-fake-news.html
(2) J. Kaiser. 2016. Q&A: Crowdsourced Personal Genomes Database Slowly Gains Momentum. Science, 20 October 2016. https://t.co/wzQ0OWRd7K
(3) E. C. Hayden. 2016. The Flip Side of Personal Genomics: When a Mutation Doesn’t Spell Disease. Nature, 15 November 2016. http://www.nature.com/news/the-flip-side-of-personal-genomics-when-a-mutation-doesn-t-spell-disease-1.20986
(4) E. C. Hayden. 2013. Geneticists Push for Global Data Sharing. Nature, 5 June 2013. http://www.nature.com/news/geneticists-push-for-global-data-sharing-1.13133
(5) National Human Genome Research Institute. Genetic Information Nondiscrimination Act of 2008. https://www.genome.gov/10002328/
(6) K. Peikoff. 2014. Fearing Punishment for Bad Genes. The New York Times, 7 April 2014. http://nyti.ms/1e644sJ
(7) M. Funk. The Secret Agenda of a Facebook Quiz. The New York Times, 19 November 2016. http://nyti.ms/2fbo9PQ
(8) P. Belluck. 2001. Nuns Offer Clues to Alzheimer’s and Aging. The New York Times, 7 May 2001. http://www.nytimes.com/2001/05/07/us/nuns-offer-clues-to-alzheimer-s-and-aging.html
(9) J. A. Mortimer et al. 2005. Very Early Detection of Alzheimer Neuropathology and the Role of Brain Reserve in Modifying Its Clinical Expression. Journal of Geriatr. Psychiatry Neurol. 18(44):218-223.