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GINA's Family History Restrictions Undercut Insurer Risk Models, Humana Official Says


Originally published March 30.

By Turna Ray

Restrictions in the Genetic Information Non-discrimination Act barring insurers from asking plan enrollees about their family history could reduce the effectiveness of payors' disease risk-prediction models, according to Derek van Amerongen, chief medical officer at Humana Health Plans of Ohio.

GINA became law two years ago, and health insurers were required to come under compliance last November. While it still remains to be seen the degree to which the law will "deteriorate" payor's predictive models, it could potentially make those predictions more imprecise, van Amerongen said last week at a conference hosted by the Center for Business Intelligence in Baltimore, Md.

In his presentation at the meeting, van Amerongen said that GINA's restrictions could also impact family discharge planning from the hospital; decrease referrals to programs based on data from health risk-assessment surveys; and affect systems in place to increase identification and referrals of enrollees to certain risk-management programs.

Former US President George W. Bush signed GINA into law in May 2008, after many iterations of the bill struggled to clear Congress for over decade. The version of GINA that finally passed is designed to ensure that information about one's genetic predisposition for disease will not be used by insurers for underwriting purposes or by employers to make employment decisions.

However, the law does bar payors and employers from asking about or using genetic information if such information is part a person’s pre-existing conditions. Additionally, GINA's provisions do not apply to life insurance firms or to providers of disability insurance [see PGx Reporter 05-07-2008].

One of the main components of GINA is the prohibition on employers and insurers from asking people about their family history data, since family history can often be a strong indicator of genetic predisposition for disease.

Specifically, GINA restricts employers and insurers from asking employees or beneficiaries for family medical histories; from offering rewards for completing health assessment questionnaires that ask about family history; from collecting family history information prior to enrollment in a health insurance plan; and from using any family history or genetic data in underwriting.

In implementing GINA, payor groups have expressed concern that the law's definition of "underwriting" is too broad and should allow payors to offer incentives to beneficiaries for completing health risk assessment questionnaires asking about family history. These rewards are critical for encouraging enrollees to complete surveys, which are then used by payors to guide enrollment in wellness and risk-management programs.

DMAA: The Care Continuum Alliance, representing more than 200 corporations and individual members, wrote a letter on Nov. 2 to the heads of three government agencies — the Department of Health and Human Services, the Department of the Treasury, and the Department of Labor — requesting an "immediate moratorium on the implementation and enforcement of" GINA until an inter-agency investigation determines how the law's restriction on the use of genetic information for "underwriting" purposes would impact wellness and chronic disease-management programs under health plans [see PGx Reporter 12-02-2009].

No such moratorium was issued. However, although payors are prohibited to offer incentives for completing health risk surveys, should someone voluntarily offer family history information, health insurers will not be violating GINA and can then use this information for underwriting.

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Humana requires prior authorization for most genetic tests. DNA Direct, a subsidiary of Medco, provides test utilization services to Humana and helps guide physicians through the prior authorization and genetic counseling process [see PGx Reporter 02-03-2010]. Along with many others in the health insurance industry, van Amerongen assured that Humana has lifted all family history questions from health risk assessment questionnaires and changed its privacy notice to inform beneficiaries about when genetic information will not be used for underwriting purposes.

Van Amerongen emphasized that while Humana tells its employees who interact with enrollees to entirely avoid family history discussions, any such information the enrollee offers voluntarily is "fair game." He added that people "love sharing their stories" and nurse practitioners often encounter people who want to offer information about their family's medical history.

Such voluntary sharing of family history data has been "high" among Humana plan members and has likely "diluted the effects of GINA," Van Amerongen added.

In order to be in compliance with GINA, insurers are required to inform enrollees of certain restrictions under the law in policy contracts and risk assessment surveys, information on GINA was not easily located by Pharmacogenomics Reporter on Humana's website ( A search from the main section of the website with the terms "Genetic Information Non-discrimination Act," "Genetic Information Nondiscrimination Act," "genetic discrimination," or "GINA" yielded no results. A search for the term "genetic testing" under Humana's Medical Coverage Policies section yielded several results detailing which tests the insurer does and does not cover.

There is a section on Humana's website dedicated to molecular diagnostics and genetic testing, which explains its prior authorization policy, and notes that "physicians will be asked to provide information and/or answer questions about the patient's condition and past medical/family history." But even in this section specifically dedicated to genetic testing information, there is no mention of GINA or its restrictions on requesting family history data.

Insurers may not be legally required to include information about GINA directly on their websites, but it is reasonable to expect that would be the first place that a person would turn in order to seek his or her insurers' position on genetic discrimination or how the law affects certain policies and programs.

Several requests to Humana about where to find information on its website about GINA went unanswered. In comparison, a search for "Genetic Information Nondiscrimination Act" yielded results on Aetna and Blue Cross Blue Shild's websites, describing their position and policies on genetic discrimination.

In a related issue, at the CBI conference, an audience member questioned van Amerongen about whether forthcoming CPT coding for molecular tests — which would provide more granularity to payors about the types of genetic tests being taken by their beneficiaries — would constitute an involuntary disclosure of genetic data.

The American Medical Association has formed a molecular pathology workgroup to issue recommendations for modernizing the reimbursement codes for molecular diagnostic and genetic tests, which aim to characterize these complex tests more precisely than the current reimbursement method of CPT code stacking [see PGx Reporter 03-17-2010].

In van Amerongen's view, if a patient receives a genetic test and his or her physician bills Humana with a CPT code, then the procedure described in that code becomes part of the patient's medical record. In this way, if a payor learns that a beneficiary received a particular genetic test through new CPT coding, it would not constitute an involuntary disclosure that would violate GINA statutes, van Amerongen posited.

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In the end, van Amerongen cautioned against "going overboard" by misreading GINA's provisions and keeping legal disclosures of medical information from insurers. When the Health Insurance Portability and Accountability Act was initially passed, protecting certain personal health information from being shared with employers and advertising agencies, insurers had a difficult time getting doctors and nurses to reveal basic medical information about enrollees, van Amerongen recalled.

"We have to recognize the bright lines [set out by GINA] and operate within them," he said.

Furthermore, van Amerongen acknowledged that while instances of genetic discrimination by employers and payors are uncommon, they do happen.

In 2002, the Burlington Northern Santa Fe Railway Corporation paid $2.2 million to workers in a lawsuit for performing genetic testing without their knowledge. In 1999, Lawrence Berkeley Laboratory was found to be in violation of Title VII of the Civil Rights Act of 1964 and privacy laws in California for conducting pre-employment screening for genetic traits such as sickle cell disease, and non-genetic factors such as pregnancy.

"The public's fears are not unfounded," van Amerongen said. "But it is up to the [insurance] industry to highlight to the public all the benefits they can get from participating" in health risk assessments and by voluntarily sharing their family history data.

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