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Genetic Information Nondiscrimination Act

Health Insurers may not:

Employers cannot:

Use genetic info to make decisions involving hiring, firing, job assignments, salary, or promotions
Request, require, or purchase genetic information about employees or their family members

GINA was a 13 year effort by the Coalition for Genetic Fairness
Applies to all health insurance programs, including Medicare supplemental policies, and plans regulated by the federal government under ERISA, state-regulated plans, Medigap, and the individual market
There are some exceptions to this rule:

Example - people employed in law enforcement might be required to submit DNA samples prior to becoming involved with crime scene investigation
Employers with fewer than 15 employees are not required to abide by the employment protections set forth by GINA

Allows genetic testing only to monitor the adverse effects of hazardous workplace exposures
Requires genetic information possessed by employers to be confidentially maintained and disclosed only to the employee or under other tightly controlled circumstances
Covers employers, employment agencies, labor organizations, and training programs

GINA does not apply to life, disability, or long-term care insurance

Many genetic counselors advise people to get life insurance before genetic testing
Some life insurers ask about genetic testing, others don’t
Some increase premiums or deny; others don’t

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Employer-Sponsored Wellness Programs

ACA and EEOC allow inducements of up to 50% of one’s health premium
Workers and spouses feel pressured into providing health history information and undergoing medical exams

Employers are pushing wellness programs to counter rising healthcare costs, shifting more of the expense to their employees. Wellness is a multibillion dollar industry. Third-party vendors administer the majority of employer-based programs. These companies are not bound by the same laws that protect privacy and individual rights as employers or healthcare providers
Large and mid-size employers expect to spend an average of $3.6 million this year on their well-being programs.
The average per-employee incentive is now $762—nearly three times the average employee incentive of $260 in 2009
Employers offering incentives to spouses and domestic partners increased to 58 percent in 2019, up from 54 percent in 2018
Financial incentives are tied to reducing workers’ health care plan premiums, or funding an employee’s health savings account.

Studies show:

no significant differences in clinical measures of health, health care spending and utilization, and employment outcomes
Yale wellness program requires that people waive their HIPAA rights & allows employer access to claims data

Corporate Wellness Programs

Privacy policies consist of legal jargon, references to �waiving one’s privacy rights, and ways info can be �reused, e.g. research & selling data to commercial entities

“access detailed reports with granular view of participant data”
“automatically pull participant HRA data directly into their database…�as often as they would like”

ALL parties should be required to abide by laws �to protect patient privacy and health data.

Wellsource and Zensey (owned by Optum/UnitedHealthcare) are 2 big ones
Women who use Ovia must consent to its 6,000-word “terms of use,” which grant the company a “royalty-free, perpetual, and irrevocable license, throughout the universe” to “utilize and exploit” their de-identified personal information for scientific research and “external and internal marketing purposes.” Ovia may also “sell, lease or lend aggregated Personal Information to third parties,” the document adds.

the company can access a vast range of aggregated data about its employees, including their average age, number of children and current trimester; the average time it took them to get pregnant; the percentage who had high-risk pregnancies, conceived after a stretch of infertility, had C-sections or gave birth prematurely; and the new moms’ return-to-work timing.
it’s relatively easy for a bad actor to “re-identify” a person by cross-referencing that information with other data. The trackers’ availability in companies with few pregnant women on staff, they say, could also leave the data vulnerable to abuse.