Nancy Gallo has always known she ought to exercise more and watch her diet to keep her weight down — but following through was a struggle. Then, in 2013, her employer, the insurer Aetna, started testing a wellness program, as is becoming common in many American workplaces seeking to lower health care costs. But this wasn’t a mere gym membership, and it even went beyond pedometers: It involved collecting her DNA.
Gallo, 47, submitted a saliva sample to Newtopia, a Canadian company that aims to combine genetic analysis with activity-tracking devices and online coaching to lower employees’ risk of ailments including heart disease, stroke, and diabetes.
Newtopia says its program is super-personalized and effective. Privacy and health experts, however, question the extent to which DNA testing can actually help workers improve their habits. And they express general worry that employees are giving up such comprehensive biometric data, although Newtopia stresses that it keeps their information private and secure in accordance with federal law.
Newtopia’s model “is more invasive in the sense that there is much more personal health information collected,” said Nico Pronk, chief science officer at the Minnesota hospital system HealthPartners, who studies the effectiveness of workplace wellness programs.
Newtopia rolls out its service to an expected 3,000 participants this year and 10,000 by the end of 2016, and its wellness program is one of the first to add DNA testing to the mix. But it could be the start of a trend, as wellness programs in general proliferate under the Affordable Care Act: One analysis found that half of all organizations with at least 50 employees have them. Some constantly monitor employees’ movements with wearable devices. One such partnership, between the insurer John Hancock and the wellness firm Vitality, awards points to employees who rack up steps on their Fitbits; the higher the points, the more they can save each year on life insurance premiums. At the same time, there are questions about whether these programs significantly improve workers’ health and unfairly penalize employees for not participating, as the Equal Employment Opportunity Commission alleged in lawsuits it filed last year.
In Newtopia’s program, employees either undergo a physical exam or answer questionnaires to see if they are out of range for five metabolic syndrome risk factors such as body mass index, blood pressure, and cholesterol levels. (Having three of the five qualifies as having metabolic syndrome, which is the case for an estimated 44 million American adults; Newtopia focuses on people with at least two risk factors.) Workers can then volunteer to confidentially submit a saliva sample; a consent form is required.
The DNA test allows Newtopia to “let people know what they may have inherited from parents that may be having an impact on their weight and lifestyle, so they can stop blaming themselves and also have a greater sense of control,” CEO Jeff Ruby told BuzzFeed News. Newtopia analyzes three specific genes that have been shown in peer-reviewed studies to influence how diet and exercise impact weight, fat, and metabolism. Workers fill out online profiles about themselves too, and all that information helps Newtopia design tailored workout and diet regimens. Employees check in with online coaches every other week, wear a provided activity tracker, weigh in on a wireless scale, and can chat with other participants about their shared problems.
“The goal is, how do you understand what each individual needs in a more significant way as opposed to blindly throwing corporate wellness programs or health benefits at people?” Ruby said.
In a study funded by Aetna and published late last month in the The Journal of Occupational and Environmental Medicine, Aetna reported that three-fourths of 421 participants in its yearlong pilot with Newtopia lost an average of 10 pounds. Average health care costs per person decreased by $122 each month, adding up to a total savings of $600,000. Those are just the health-associated savings; researchers calculated that the program would have a positive return on investment in the first year if fully implemented.
Pronk questions whether the genetic testing makes a significant difference, since he considers a 10-pound loss “average” for good workplace weight-loss programs. In a yearlong Mayo Clinic study, for example, employees who received $20 a month for meeting their weight loss goals lost on average 9 pounds; a 12-week program at Sprint resulted in an average loss of 8 pounds. Newtopia says the number is not as important as the fact that there is a 5%-7% weight loss, which corresponds to lowered metabolic syndrome risk. To prove the model is effective, Pronk said the company should follow up with data about participants’ health post-intervention; Newtopia says early results show that employees are able to maintain or even increase their weight loss.
Gallo, an Aetna employee of 18 years who lives in Pittsburgh, credits the program with helping her shed a total of 83 pounds over two years. Her coach told her that because she had genetic variations linked to obesity and increased appetite, she should slow down while eating, eat smaller portions, and reduce her fat intake. Gallo acknowledged this is fairly common weight-loss advice, but it helped reinforce what she knew she had to do. “It seems odd to give DNA, but it does work,” she told BuzzFeed News. She admitted, though, that she had “no idea” what would happen to her DNA after she stopped participating.
Ruby said that Newtopia’s scientists continue to study anonymized DNA samples in order to improve the program’s personalized recommendations. Customers can ask for their samples to be destroyed, and their genetic information is never shared with affiliated businesses (except for the lab that analyzes it) or employers, the latter of which is prohibited under the Genetic Information Nondiscrimination Act of 2008, the company says. In addition, Newtopia says that its business and the information it handles are compliant with federal privacy laws.
Ruby added that Newtopia doesn’t plan to license access to its database to, say, pharmaceutical companies: “We’re not following the 23andMe-esque approach.” Its privacy policy notes that the company will only share health data with “persons who need that information to take care of you.”
Still, putting sensitive health information in a company’s hands is an act of trust, and there’s no such thing as a true guarantee that data will always be secure, said Ifeoma Ajunwa, an assistant professor of law at the University of the District of Columbia who studies privacy issues in corporate wellness programs.
“Collecting genetic information is just collecting this treasure trove of information for hackers,” she told BuzzFeed News. “Even if the employer has all intent to safeguard information, there’s no guarantee that the employer can safeguard the information.”