Genes for Good, the Bad, and the Ugly: Social Media’s Impact on Genetic Testing and Research
By Nicole Choy
On June 13, 2019, researchers at the University of Michigan published intermediate results from a genomic health research study conducted through Facebook. This is the first study of its kind to demonstrate the effectiveness of study recruitment using a social media platform. In an attempt to collect genomic and health related data for tens of thousands of participants, the study also promised to return health, behavior, and ancestry data to participants in exchange for submitting their genomic samples and continued participation. However, recent reports of Medicare scams promising free genetic testing may have many individuals questioning the reliability of social media and genomic research.
Lack of diversity is a problem in genomics research
This unique choice for study recruitment was motivated by the fact that the majority of genomics research can only be applied to a homogenous group of people. Last year, a whopping 78% of participants in genome-wide associated studies (GWAS) were of European ancestry. Katharine Brieger, a doctoral student in public health at the University of Michigan and first author on the paper, emphasized the lack of diversity in genomics research and explained that, in order for the results of genomics research to be relevant to the general public, it was important that sample populations reflected a wide range of racial, ethnic, and socioeconomic demographics. The lack of diversity in genomics research threatens to exacerbate the existing disparities within healthcare.
The study, Genes for Good, intended to address the lack of diverse demographic involvement in genomics research by making recruitment and study participation more accessible via social media, specifically through an app hosted within Facebook’s platform. The rationale for this method of subject recruitment hinged on the fact that social media is a daily activity for many adults in the United States. According to a survey conducted by the Pew Research Center, approximately 69% of Americans use Facebook, with about 74% of them checking their Facebook at least once a day. Researchers at the University of Michigan hypothesized that if they used social media as a method of recruitment, they would be better equipped to overcome some of the barriers that lead to homogenous subject populations. The intermediate results of their study show that they were definitely onto something.
Recruiting through social media has encouraged diversity of study population
Preliminary analysis of the demographics of participants show that subject recruitment through social media has already been more successful in collecting samples from a population that more accurately reflects the racial, ethnic, and socioeconomic demographics of the U.S. population. Approximately 76% of the participants in Genes for Good were non-Hispanic whites, 8.8% multi-racial/other, 8.3% Hispanic/Latino, 3.8% Asian, and 2.7% African American. “Most genetic studies end up being 90-95% white. The 76% we have is closer to the U.S. population,” stated Gonçalo Abecasis, senior author and professor of public health. Socioeconomic diversity was also captured in this initial publication of the study. While the majority of participants in 23andMe reported having an annual household income of $100,000 or more, the sample collected by Genes for Good more closely resembles the U.S. population with the majority of participants reporting a household income of approximately $35,000 – $100,000 annually.
Differentiating between true research… and scams
Although the increased diversity of the Genes for Good study population may be a good thing for genomics research, the idea of using social media for recruitment does warrant a closer look. When the study was first announced in 2015 and was picked up by various news outlets such as Huffington Post and Buzzfeed News, the majority of the expressed concerns were related to privacy and security risks. Researchers reassured participants that their health and genomic data was being securely managed and stored outside of the Facebook platform. But this was back in 2015.
Since then, the market for at-home genetic testing has exploded. In 2015, there were only a handful of genetic testing companies, the majority of which were only offering ancestry testing. But in 2019, the number of at-home genetic testing companies has grown significantly, and now many are offering testing related to health risks. The relationship between social media and genetic testing has changed drastically in the four short years since the Genes for Good study first began their initial recruitment. While social media has allowed researchers to access a more diverse population of possible participants, one of the pitfalls of social media is the ease with which accurate and credible information can get lost amidst false reports. Social media allows for the easy distribution of information, a contributing factor in the success of the Genes for Good recruitment. However, it is just as easy for false information to go “viral” on social media, making it the perfect medium for scammers to take advantage of the misinformation for their own personal gain.
In early June of 2019, the U.S. Department of Health and Human Services Office of Inspector General issued a fraud alert, warning citizens that scammers were offering Medicare beneficiaries genetic testing in order to obtain their Medicare information for identity theft or insurance fraud. Genetic testing is introduced and offered through advertisements; this can be done via presentations at senior living facilities, through the mail or phone, or possibly via social media. Once an individual expresses interest, a saliva testing kit is sent through the mail, without the approval of a physician or assessment of medically necessity. With so many at-home genetic testing options being advertised to consumers these days, it is understandably difficult to be able to parse which of those genetic testing opportunities are legitimate.
So, what does this mean for Genes for Good or other studies that choose to employ subject recruitment through social media?
The short answer is— we don’t know. The use of social media for subject recruitment is still a relatively new practice, with Genes for Good being one of the first studies of its kind to report on the benefits of doing so. While it cannot be ignored that using social media as a means of subject recruitment has allowed for researchers to increase the diversity of the study population, being able to draw clear lines between what is legitimate research and what might be a scam may be difficult. With a quick glance at the Genes for Good platform on Facebook, one can see how easy it would be to falsify a landing page claiming to offer free genetic testing for the purposes of research or consumer benefit. This is further complicated by the fact that it seems that participants did not need to speak with a genetic counselor or physician before receiving a saliva collection kit in the mail—something the Office of Inspector General warns may be a sign that the genetic testing in question may be associated with a scam. With scammers getting more sophisticated, and the ease with which false information can be disseminated on the internet, it is understandable that the public may find it difficult to determine which genetic testing opportunities are credible, and which are not.
How can you assess whether an ad is related to research—or just a scam?
If genetic testing is being offering under the premise of research opportunities, check to see if the materials or websites related to the study are branded with a credible research institution. These can include a university or company website or phone number that you can use to verify the legitimacy of the research opportunity and ask any questions that you might have related to the study.
Federal regulations require that studies involving human subjects be approved by an Institutional Review Board (IRB). The IRB is an administrative body whose goal is to protect the rights and welfare of human research subjects.
If you are being asked to provide your insurance information, be wary!
The Office of Inspector General also offers some helpful tips in protecting yourself against Medicare scams:
- If a genetic testing kit is mailed to you, don’t accept it unless it was ordered by your physician. Refuse the delivery or return it to the sender. Keep a record of the sender’s name and the date you returned the items.
- Be suspicious of anyone who offers you free genetic testing and then requests your Medicare number. If your personal information is compromised, it may be used in other fraud schemes.
- A physician that you know and trust should approve any requests for genetic testing.
- Medicare beneficiaries should be cautious of unsolicited requests for their Medicare numbers. If anyone other than your physician’s office requests your Medicare information, do not provide it.
- If you suspect Medicare fraud, contact the HHS OIG Hotline.
Further Reading & Quality News Coverage
Brieger, K, Zajac, G, Pandit, A, et al. “Genes for Good: Engaging the Public in Genetics Research via Social Media.” American Journal of Human Genetics. June 13, 2019.
Nardy Baeza Bickel. “Genes for Good: Harnessing the power of Facebook to study a large, diverse genetic pool.” University of Michigan News. June 13, 2019.
Vicky Stein. “Genetic research has a white bias, and it may be hurting everyone’s health.” PBS. March 21, 2019.
John Gramlich. “10 facts about Americans and Facebook.” Pew Research Center. May 16, 2019.
Carolyn Gregoire. “Want To Get Your DNA Tested? There’s A Facebook App For That.” Huffington Post. April 3, 2015.
Virginia Hughes. “A New Facebook App Wants To Test Your DNA.” Buzzfeed News. March 31, 2015.
“Fraud Alert: Genetic Testing Scam.” U.S. Department of Health and Human Services Office of Inspector General. Updated: June 3, 2019.