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Privacy Tracker | Employee wellness bill would circumvent genetic privacy protections Related reading: Privacy dynamics and the quest for convergence and commonality




On March 2, U.S. Rep. Virginia Foxx, R-N.C., introduced bill HR 1313 to the U.S. House (cosponsored by Rep. Tim Walberg, R-Mich., Rep. Elise Stefanik, R-N.Y., and Rep. Paul Mitchell, R-Mich.). This bill has a significant impact on employee privacy, specifically genetic privacy.

The expressed purpose of HR 1313

The bill is named the “Preserving Employee Wellness Programs Act,” and it includes findings that Congress seeks to protect and preserve employee workplace wellness programs; considers such programs to be a means of reducing health care costs; and enacts the intent of Congress to increase incentives for participating in such a program to 50 percent. The findings state that the bill has found an “appropriate balance among employees, health care providers and wellness plan sponsors to protect individual privacy and confidentiality.”

Notably absent are findings that wellness programs are in any way at risk and requiring preservation. Even so, the bill proposes means of preserving wellness programs while weakening employee rights to privacy and confidentiality with respect to their genetic information.

Employee wellness programs must comply with the anti-discrimination provisions of the Public Health Service Act and the Genetic Information Nondiscrimination Act of 2008 as well as the Americans with Disabilities Act of 1990. While HR 1313 doesn’t change the necessity to comply with these laws, it eases compliance with these laws for employers and wellness plans in ways that force employees to choose between genetic privacy and higher health insurance costs.

HR 1313 and the Public Health Service Act

Presently, under the PHSA, group health plans are permitted to offer a financial incentive of up to 30 percent of the total cost of health insurance in exchange for the employee participating in an employee wellness program. The act permits this incentive to be raised to 50 percent upon action by the Secretaries of Labor, Health and Human Services, and the Treasury — which has not yet occurred. HR 1313 would raise this financial incentive to 50 percent immediately.

The PHSA further prohibits a group health plan from requesting, requiring or purchasing genetic information about an employee. HR 1313 also would remove this prohibition.

HR 1313 and the Genetic Information Non-Discrimination Act

GINA currently prohibits the use of genetic information in all employment decisions and prohibits employers from requesting, requiring or purchasing genetic information of employees except under certain specific circumstances, where:

(1)  Health or genetic services are offered by the employer, including such services offered as part of a wellness program;

(2)  The employee provides prior, knowing, voluntary and written authorization;

(3)  Only very specific people connected with treatment receive the individually identifiable genetic information, and it is not shared with the employer.

42 U.S.C. 2000ff–1(b)(2).

Regulations promulgated under GINA state clearly that an employer “may not offer an inducement for individuals to provide genetic information” (29 CFR 1635.8(b)(2)(ii)). HR 1313 states that employers “shall be considered to be in compliance with” the aforementioned exception, and changing the underlying statute would essentially nullify the promulgated regulation against offering inducements for genetic information.

HR 1313 and the Americans with Disabilities Act

The ADA currently prohibits covered entities from discriminating against employees based on a disability.  42 U.S.C. 12112(d)(4)(B).  The ADA section 102(d)(4)(B) provides for some voluntary examinations and inquiries, allowing “voluntary medical examinations”, which may include “voluntary” collection of medical histories that are a part of an employee health program available to employees at that work site.  The exception also permits allowing inquiries into the ability of an employee to perform job-related functions.  HR 1313 would deem employers to be automatically in compliance with this exception, causing any medical examination to be automatically considered “voluntary.”

What is contained in one’s DNA?

Although we like to think of ourselves as autonomous decision makers with control over our own destinies, there is a surprising and growing amount of information that can be gleaned from the analysis of an individual’s DNA. Such information could include whether or not one is a morning person, what one’s likely educational attainment will be, how neurotic one is, whether one is nearsighted, whether one has elevated risk for various cancers, whether one has genes for longevity, how one reacts to pressure, or whether one has the famous ‘warrior gene.’ The value of genetic information is also constantly increasing as scientists complete more and more studies that identify how certain combinations of genes affect certain traits.

Much of this information would be very interesting to employers and genetic predisposition is often misinterpreted as a manifest trait. For instance, just because one has a genetic predisposition toward being a night owl does not mean that they are not capable of waking up early to show up for work on time.


HR 1313 would remove GINA’s prohibition on the collection of genetic information by employers, remove PHSA’s prohibition of same by group health plans, cause medical examinations to be deemed voluntary (which might otherwise be deemed forced under the ADA), and then allow information gleaned by all aforementioned methods to be shared directly with the employer. 

Simultaneously, HR 1313 would create a situation in which employees must choose to voluntarily submit to sharing genetic information or pay 50 percent of the total cost of their health plan, including both employer and employee contributions. Currently, employers cannot incentivize the sharing of genetic information at all.

However useful genetic information may be to an employer today, the same data may be significantly more useful and potentially more damaging later as science improves. The same DNA sample gains informational value over time and needs not be recollected as science’s ability to discern traits from samples advances.  This is why, however concerned we may be about genetic privacy today, the consequences tomorrow for getting it wrong today will be even worse than we can currently imagine.

This is also why it is very unlikely if not manifestly impossible that Congress has found an “appropriate balance” in protecting individual privacy and confidentiality.

photo credit: Close-up of hands taking blood pressure via photopin (license)

1 Comment

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  • comment Lindsey Partridge • Mar 16, 2017
    Very interesting article!