THE INTERSECTION OF GINA WITH HEALTH CARE REFORM
The dramatic evolution of biomedical technology in the 13 years since GINA was first introduced and the complexity of genomic information may have blunted the merits of the law's initial protections. In addition, the recent passing of the Patient Protection and Affordable Care Act (PPACA), commonly known as health care reform, requires that health care providers understand how GINA intersects with health care reform and its implications for protecting patients.
In some ways, GINA was a harbinger of health care reform. In a 2009 article, Korobkin and Rajkumar asked, "If we are willing to spread the costs associated with genetic risk across the population, why shouldn't we do the same for all health risks?"4 The most basic tenet of GINA, nondiscrimination in the use of genetic information, must be viewed in the framework of our still-limited knowledge about the causes of disease. Ultimately, the question of health risk and subsequent use of risk information for medical underwriting must be addressed by a more just health care delivery system. The difference between genetic risk and other health risks is relatively arbitrary, and health insurance premiums should be assessed on the basis of a community rate and should be the same for all people within a given age-group with possible exceptions for risk factors that are deemed to be within each person's reasonable control.4
The details of the PPACA or its gradual introduction into practice cannot be covered by this brief article, but the legislation will eventually address patient issues that GINA does not. At a minimum, PAs should be aware of the implementation timeline for PPACA, especially as it relates to preexisting conditions.
Children with pre-existing conditions will be the first to benefit from PPACA. Children up to age 19 years are entitled to access to health care coverage without regard to their current health status or risk (including genetic conditions), effective 6 months after enactment of the law.5 This protection will not apply to adults until 2014, when insurers can no longer exclude coverage for treatments based on pre-existing conditions. Ninety days after the law is enacted, however, uninsured Americans with pre-existing conditions will have access to health insurance as part of a temporary high-risk pool that bridges to the 2014 protections.5 Preventive health services, prohibition of insurance withdrawal when people become sick, improved access to innovative medical therapies, and a multitude of other protections will apply to those with pre-existing conditions, including conditions that have a genetic basis. Detailed summaries of PPACA are available from the AAPA and other reliable sources (www.aapa.org/advocacy-and-practice-resources/federal-advocacy/1767-aa, dpc.senate.gov/healthreformbill/healthbill52.pdf).
In the meantime, some concerns are that GINA may have the potential for more harm than good.6 For example, patients and their health care providers who do not properly understand the protections offered by GINA may blindly consider undergoing genetic testing, which in turn may lead to discrimination beyond the scope of the law—at least until health care reform is applied or refined.6 PAs ultimately should be knowledgeable about health care policy so our patients can receive quality care without incurring the risk of discrimination.
USE IN CLINICAL SETTINGS
Examples of the potential application of GINA in clinical settings are useful. The National Coalition for Healthcare Professional Education in Genetics (NCHPEG) has a discussion guide and case examples for health care providers at its Web site (www.nchpeg.org/). The case at the beginning of this article is used with permission from NCHPEG. In addition, this Web site provides information about when to talk to a patient about GINA as well as suggested discussion points.
The case at the beginning of this article elicited a few questions and introduced several issues related to the application of GINA. This case is designed to illustrate the concept of a diagnosed genetic condition in a patient and a family member's increased risk of developing the condition. NCHPEG, the Genetics and Public Policy Center, and Genetic Alliance developed four cases, including one on employment discrimination, that demonstrate the scope of the protections afforded by GINA. Additional educational materials from these groups are available at www.DNApolicy.org and www.geneticalliance.org/issues.discrimination.
The issues presented in our case: (1) GINA does not prevent a health care insurance carrier from using the diagnosis of breast cancer when underwriting decisions with respect to the patient (Rachel).7 (2) The increased risk of other cancers based on the patient's BRCA1 mutation is genetic information and is protected by GINA. That fact might be immaterial in practice, however, because the patient has already received a diagnosis of breast cancer. (3) GINA protects the patient's family member (Stephanie) from the misuse of information about her family history of hereditary breast cancer. (4) Stephanie's health care insurance carrier may request information from her family history to determine whether to cover the cost of BRCA mutation testing for her.
(5) GINA should not inhibit patients from sharing family history information with health care providers. Rather, the law should ease concerns about sharing information within families and with health care providers. (6) Although GINA does not cover the manifest condition (in this case, breast cancer) in the patient, PPACA will protect adults with preexisting conditions against discrimination by health insurance carriers, beginning in 2014. The health care reform legislation ensures that children up to age 19 years have health insurance even earlier, beginning 6 months after enactment of the law.7 JAAPA
Constance Goldgar is associate director of the University of Utah PA program in Salt Lake City. The author is the National Coalition for Health Professional Education in Genetics (NCHPEG) representative for the Physician Assistant Education Association. NCHPEG is an NIH-supported institution that provides free educational products for health professionals.
Michael A. Rackover, PA-C, MS; Constance Goldgar, MS, PA-C, department editors
REFERENCES
1. Case 3: GINA, manifest disease, and predisposition. National Coalition for Health Professional Education in Genetics Web site. http://www.nchpeg.org/index.php?option=com_content&view=article&id=186&Itemid=120. Accessed June 5, 2010.
2. Hudson KL, Holohan MK, Collins FS. Keeping pace with the times—the Genetic Information Nondiscrimination Act of 2008. N Engl J Med. 2008;358(25):2661-2663.
3. National Human Genome Research Institute. Genetic Information Nondiscrimination Act (GINA) of 2008. http://www.genome.gov/24519851. Last reviewed March 11, 2010. Accessed June 5, 2010.
4. Korobkin R, Rajkumar R. The Genetic Information Nondiscrimination Act—a half-step toward risk sharing. N Engl J Med. 2008;359(4):335-337.
5. The Patient Protection and Affordable Care Act and
the Health Care and Education Reconciliation Act. Democratic Policy Committee Web site. http://dpc.senate.gov/
dpcdoc-sen_health_care_bill.cfm. Accessed June 5, 2010.
6. Rothstein MA. Putting the Genetic Information Nondiscrimination Act in context. Genet Med. 2008;10(9):655-656.
7. Genetics and Public Policy Center, National Coalition for Health Professional Education in Genetics, Genetic Alliance. A discussion guide for clinicians. http://www.dnapolicy.org/resources/GINAfinal-discussionguide-3June10.pdf. Accessed June 4, 2010.