The Genetic Information Nondiscrimination Act (GINA), Health Risk Assessments (HRAs) and Lawyers Run Amok

The Disease Management Care Blog received a DMAA email containing this press release today. It calls for a moratorium in “GINA regulation implementation.”

What’s this about you ask? The DMCB at your service.

GINA is part of the logarithmically expanding blob of Washington D.C. acronyms. This particular one refers to the ‘Genetic Information Nondiscrimation Act’ that was signed into law by President Bush on May 21, 2008. Its intent was to prevent discrimination based on genetic information by health insurers and employers.

In reading about the act here, it appears that the way discrimination is prevented is by prohibiting employers and health insurers from collecting any genetic information in the first place. In addition to not collecting it, insurers are also prohibited from using it for decisions about coverage or rates (by insurers) or for hiring, firing, promotions or other decisions about the terms of employment (employers).

So far so good.

So the intrepid DMCB went to the text of the law itself and found a lot of language stating that collecting and use of ‘genetic information’ was prohibited in health insurance ‘underwriting.’ The statute has very clear definitions of underwriting (‘health insurance rules used to determine eligibility, computation of premiums, exclusions of pre-existing conditions and other activities related to contracting health benefits’) and genetic information (‘results of genetic tests of the individual or the family members and the manifestation of a disease or disorder in family members of an individual’).

The DMCB is struck by the inclusion of ‘family history.’ Read on and you’ll see why.

On Oct 7, 2009, the Departments of Labor, Treasury, HHS and the Equality Employment Opportunity Commission released proposed regulations a.k.a interim final rules that are intended to guide their interpretation and enforcement of GINA. The rules become effective on December 8, 2009.

The lawyers that crafted these regulations must have also been struck by the term ‘family history,’ because they’ve addressed it in the context of health risk assessments (HRAs).

HRAs are widely used in the population-based health care. It typically consists of questionnaire that asks a series of health related questions. The individual answers can then be summed up to determine an overall risk score in one or more health domains. This is an example of an HRA used to assess the risk from being overweight, while this HRA determines the risk of future heart attack. Note that both of these examples include family history as one factor in the overall assessment of risk.

What do the interim final rules say? They correctly point out that HRAs that include family history questions are typically distributed at the time of new or re-enrollment and are often accompanied by incentives to complete the survey. When present, these incentives consist of rewards such a premium reductions, lower deductibles and cash bonuses. Since this is money that is tied to the premium which is defined to be part of underwriting, the practice will become illegal on December 7.

What’s more, if the HRA is requested prior to enrollment, even if there is no payment to the enrollee, the act of collecting the ‘genetic information is also a violation of the law.

If your disease management organization, population-based care company, employees benefit plan or health insurer uses HRAs at the time of open enrollment, you have two choices:

Change how the HRA is done: No financial incentives, period. What’s more, the HRA can’t be distributed or collected until after enrollment,

or

Strip all the family history questions out of the HRA.

The DMCB agrees with the DMAA that the interim rules need to be put on hold until this twisted pretzel logic of lawyers run amok is straightened out.

First of all, while inquiries about family history can be intrusive to individuals completing HRAs, the cash value of the incentives are undoubtedly very welcome and are a fair value transaction.

The DMCB also did a word search of the original statute and did not find the term ‘health risk assessment.’ It doubts our legislators intended to sweep HRAs into the scope of this legislation.

It is also illogical to group the practice of increased payment to all enrollees with and without significant family histories with the other repugnant practices of charging more or denying benefits on the basis of genetic history. The resemblance is superficial to anyone with common sense.

In addition, in real practice, it is highly unlikely that the underwriters in any health plan would harvest the data from HRAs and mathematically price it into their premium decision-making. It is theoretically possible, but that’s simply not how the business is operates.

Last but not least, the risk of harm from showing some flexibility around this topic is far less than the risk of harm from hobbling how HRAs are distributed, completed and used. Thanks to HRAs, companies are not only extending hard cash but using the information to provide a higher level of service to individuals who would benefit from it.

If the DMCB is reading things right, comments on this silliness can apparently still be submitted (E-OHPSCA.EBSA@dol.gov) through January 5, 2010. The DMCB copied the above text and simply emailed it in over its signature.