Discrimination In Health Insurance Research Articles

Abstract B101: Knowledge, attitudes, and self-efficacy toward cancer genetic testing among Black women with and without breast cancer

Abstract Germline genetic testing for cancer risk offers opportunities for decision-making about screening and clinical risk management for individuals and their family members. Despite increasing availability of cancer genetic testing, Black individuals are still much less likely to receive or engage with testing compared to non-Hispanic white individuals. We sought to identify individual level factors influencing knowledge about and attitudes toward cancer genetic testing among Black women with and without breast cancer. Participants included 925 women from the Black Women’s Health Study who had previously provided a biospecimen for research and were invited to have their cancer genetic research findings confirmed via a CLIA-certified laboratory and learn their results as part of a randomized controlled trial. Prior to confirmation testing, all women completed a baseline questionnaire about personal and family history of cancer; prior genetic testing for hereditary cancer; and knowledge, attitudes, and confidence in one’s ability to use genetic information (genetics self-efficacy). We used linear regression to evaluate individual-level factors influencing cancer genetics knowledge, attitudes, and self-efficacy. Overall, mean knowledge score was 12.3 out of 16 (SD, 2.5); there were no differences in knowledge score between women who had a personal history of breast cancer and those who did not. While the majority of women answered most questions correctly, 20-30% of women were unable to correctly answer questions about validity of test results, clinical implications of a variant of uncertain significance, and legal protections against health insurance discrimination. Younger age, higher educational attainment, being married, and having had prior genetic testing were statistically significant predictors of higher total knowledge score. There were no differences in mean knowledge scores by first degree family history of breast cancer or personal history of breast or other cancer. Predictors of favorable attitudes and genetics self-efficacy included younger age, higher educational attainment, and being married. Women with a personal history of breast cancer had somewhat more favorable attitudes toward genetic testing compared to those with no prior history of breast cancer. In multivariable adjusted models, higher total knowledge was associated with more favorable attitudes and higher self-efficacy. In this cohort of highly educated Black women, overall cancer genetics knowledge was relatively high; however, evaluation of individual knowledge questions revealed opportunities for improvement in specific areas. Older women, those with lower educational attainment, and women who are not married or living as married may benefit from more targeted education about genetic cancer testing. Further, despite the role genetic testing currently plays in guiding cancer treatment, Black women who had breast cancer did not have higher knowledge scores than those without breast cancer and therefore may also benefit from targeted education. Citation Format: Kimberly A. Bertrand, Michelle Trevino-Talbot, Maggie Rudderman, Maureen Flynn, Howard J. Cabral, Julie R. Palmer, Catharine Wang. Knowledge, attitudes, and self-efficacy toward cancer genetic testing among Black women with and without breast cancer [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B101.

Do Your Genes Fit: How Life Insurance Companies Discriminate Based on Genetic Test Results

Abstract The Genetic Information Nondiscrimination Act of 2008 (GINA) represents a significant legislative step in protecting U.S. citizens from genetic discrimination in health insurance and employment. However, despite its broad preventive measures, GINA has limitations in scope and enforcement. Notably, it does not extend protections to life insurance, disability, and long-term care insurance, leaving U.S. citizens susceptible to genetic discrimination. State-level legislative efforts have tried to reconcile these vulnerabilities. Many state-level legislative efforts vary in effectiveness, with some states like Florida and Illinois enacting more robust laws. The future of genetic information protection requires an amendment to GINA or new federal legislation, drawing from successful state models to ensure adequate protections. This paper advocates for such national legislation, highlighting the minimal impact on the life insurance market and the importance of safeguarding genetic privacy to foster trust in genetic testing and scientific progress.

Geographic Differences in Patient Demographics and Performance of Gender-Affirming Surgery From 2016 to 2019.

Although legislation prohibiting gender identity discrimination in health insurance has shown some improvement in insurance coverage for gender-affirming surgery (GAS), recent bills criminalizing GAS providers in the South and Midwest regions pose threats to patient care. To investigate the influence of US census region on patient demographics and GAS rates in the ambulatory surgery setting. Individuals with gender dysphoria who underwent GAS in the ambulatory setting from 2016 to 2019 were identified in the Nationwide Ambulatory Surgery Sample (NASS) with billing codes. Demographic and clinical characteristics were analyzed and stratified by US census region. The data set included a weighted estimate of 33,174 encounters with 72.8% (95% CI, 69.1-76.2) for chest reconstruction; 24.1% (95% CI, 20.9-27.5) for surgery on the genitals and reproductive organs; and 6.0% (95% CI, 4.6-7.8) for facial surgery. Overall, the rates of GAS increased by 187%, from 4320 encounters in 2016 to 12,396 encounters in 2019. In the Midwest, GAS increased by 257% compared to 203% in the Northeast, 218% in the South, and 154% in the West. Compared to patients in the West, those in other regions had higher odds of anxiety and depression (odds ratio, 1.57; 95% CI, 1.09-2.26; P < .05) and were more likely to have lower incomes than other ambulatory surgery patients in the region (P < .001). Between 2016 and 2019, there was substantial growth of GAS in the Midwest, South, and Northeast. Regional differences in insurance coverage, socioeconomic status, availability of facial surgery, and comorbidities were observed.

Variability in Medicaid Coverage for Gender-affirming Surgeries Across U.S. States.

To describe the current Medicaid coverage landscape for gender-affirming surgery across the United States at the procedure level and identify factors associated with coverage. Medicaid coverage for gender-affirming surgery differs by state, despite a federal ban on gender identity-based discrimination in health insurance. States that cover gender-affirming surgery also differ in which procedures are included in Medicaid coverage, leading to confusion among patients and clinicians. State Medicaid policies in 2021 for gender-affirming surgery were queried for each of the 50 states and the District of Columbia (D.C.). State partisanship, state-level Medicaid protections, and coverage of gender-affirming procedures in 2021 were recorded. The linear correlation between electorate partisanship and total procedures covered was assessed. Pairwise t tests were used to compare coverage based on state partisanship and the presence or absence of state-level Medicaid protections. Medicaid coverage for gender-affirming surgery was covered in 30 states and Washington, D.C. The most commonly covered procedures were genital surgeries and mastectomy (n = 31), followed by breast augmentation (n = 21), facial feminization (n = 12), and voice modification surgery (n = 4). More procedures were covered in Democrat-controlled or leaning states, as well as in states with explicit protections for gender-affirming care in Medicaid coverage. Medicaid coverage for gender-affirming surgery is patchwork across the United States and is especially poor for facial and voice surgeries. Our study provides a convenient reference for patients and surgeons detailing which gender-affirming surgical procedures are covered by Medicaid within each state.

On discrimination in health insurance

In many countries, private health insurance companies are allowed to vary their premiums based on some information on individuals. This practice is intuitively justified by the idea that people should pay the premium corresponding to their own known risk. However, one may consider this as a form of discrimination or wrongful differential treatment. Our goal in this paper is to assess whether profiling is ethically permissible in health insurance. We go beyond the existing literature in considering a wide range of parameters, be they genetic, non-genetic, or even non-medical such as age or place of living. Analyzing several ethical concerns, and tackling the difficult question of responsibility, we argue that profiling is generally unjust in health insurance.

Estimating the Health Status of Privately Insured Gender Minority Children and Adults.

Purpose: The purpose of this study was to characterize the health status of privately insured gender minority individuals. Methods: We created a diagnosis-based algorithm to identify gender minority children and adults in the 2009-2015 IBM® MarketScan® Commercial Database. We compared the age-adjusted health status among individuals with and without gender minority-related diagnosis codes. Results: The percentage of the privately insured population with gender minority-related diagnosis codes increased from 0.004% in 2009 to 0.026% in 2015. Age-adjusted analyses demonstrated that individuals with gender minority-related diagnosis codes were more likely to have diagnoses for mental health disorders (odds ratio [OR] = 8.5; 95% confidence interval [CI] = 8.1-9.0), substance use disorders (OR = 3.4; 95% CI = 2.9-3.9), and diabetes (OR = 1.4; 95% CI = 1.2-1.6), driven by high prevalence of these conditions among individuals younger than 18 years. Conclusions: Our findings highlight a markedly greater prevalence of mental health and substance use disorder diagnoses among privately insured gender minority individuals. These results establish a reference point for evaluating the impact of federal- and state-level policies that ban health insurance discrimination based on gender identity on the health and health care use of gender minority individuals.

Advancing Equity in Nephrology: Enhancing Care for LGBTQ+ Patients and Our Workforce.

Lesbian, gay, bisexual, transgender, and queer (LGBTQ+) individuals face social, economic, legal, health, and health care–related disparities amid evolving threats to sociopolitical advances made in the last decade ([1][1],[2][2]). In response, organizations, including the National Institutes of

GINA at 10 years: the battle over 'genetic information' continues in court.

ABSTRACTTen years ago, the Genetic Information Nondiscrimination Act (‘GINA’) came into law. While it was unclear how prevalent genetic discrimination was, GINA was enacted preemptively to prevent discrimination in insurance and employment. It also created uniform protections to remedy a confusing patchwork of state and federal protections. Finally, Congress hoped GINA would allay public fears of genetic discrimination that discouraged people from undergoing genetic testing and participating in genetics research. To address those fears, Congress enacted robust protections against genetic discrimination in health insurance and employment, in part, by defining ‘genetic information’ as broadly as possible.Over the last ten years, however, the courts have been battling over the meaning of ‘genetic information’. One interpretive approach adheres strictly to GINA's statutory language; the second interprets the definition restrictively and contrary to the plain meaning of GINA and its underlying goals. While this interpretive conflict demonstrates the difficulty of distinguishing genetic information from non-medical information, this article argues for the broader interpretation. Such an interpretation reflects Congress's choice among imperfect definitional options and it furthers the goal of creating strong protections in health insurance and employment. Finally, definitional consistency is necessary to achieve uniform protections against genetic discrimination.

Awareness of the US Genetic Information Nondiscrimination Act of 2008: an online survey

Objective The US Genetic Information Nondiscrimination Act (GINA) of 2008 prohibits discrimination in health insurance and employment in the USA based on genetic information and provides important protection to Americans who undergo genetic tests. Consumers need to understand GINA to take advantage of the protections it provides against genetic discrimination. However, research regarding people's awareness of this law is scant. This study used an online survey to evaluate people's awareness of the GINA 2008 in the USA. Methods An anonymous online survey was distributed by Qualtrics to a general population panel of US residents in April 2011. The inclusion criterion for the study was adults aged 18–64. The 17-item survey included two multiple-choice questions to measure awareness and knowledge of the GINA. Key findings A total of 295 responses were collected over 4 days. Only 26 respondents (8.8%) indicated they had ever heard of the GINA 2008. When those who have heard of the Act were asked about further details, only 10 people (3.4%) could correctly identify that the GINA prohibits the improper use of genetic information in health insurance and employment. Respondents with male gender, family history of Alzheimer's disease and caregiving experience for Alzheimer's disease patients were more likely to be aware of the GINA 2008. Conclusion Three years after GINA 2008 was signed into US federal law, people's awareness of this law was found to be low. More effective dissemination of information related to this federal law may be required to improve protection against genetic discrimination.

Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act

To examine the awareness and attitudes about the Genetic Information Nondiscrimination Act in individuals who made contact with a Hereditary Breast and Ovarian Cancer Syndrome advocacy group. This is a descriptive study of individuals (n=1,699) who were invited via email and advertisements to complete an online questionnaire available from August 2009 through December 2010. Response distributions of relevant subgroups were compared using cross tabulation and Chi-squared tests were used. The majority of respondents (69.2%) had undergone genetic testing (n=1,156) and 30.2% had not. Of those who did not undergo genetic testing, the most common reason given for declining testing was cost (28.8%), followed by concerns about insurance discrimination (19.5%). More than half (60.5%) were worried about health insurance discrimination when they first considered genetic testing and 28.6% were worried about employment discrimination. Slightly more individuals were worried about health insurance discrimination if they had no prior knowledge of GINA. While "cost" was cited most frequently as the reason not to test, "fear of insurance discrimination" was the second most common reason. Knowledge of GINA among consumers is still limited and public education may help promote reduction in fear.

Family Physicians’ Awareness and Knowledge of the Genetic Information Non‐Discrimination Act (GINA)

Historically, physicians have expressed concern about their patients' risk of genetic discrimination, which has acted as a barrier to uptake of genetic services. The Genetic Information Nondiscrimination Act of 2008 (GINA) is intended to protect patients against employer and health insurance discrimination. Physicians' awareness and knowledge of GINA has yet to be evaluated. In 2009, we mailed surveys to 1500 randomly selected members of the American Academy of Family Physicians. Questions measured physicians' current knowledge of GINA and their level of concern for genetic discrimination. In total, 401 physicians completed the survey (response rate 26.9%). Approximately half (54.5%) of physicians had no awareness of GINA. Of physicians who reported basic knowledge of GINA, the majority were aware of the protections offered for group health insurance (92.7%), private health insurance (82.9%), and employment (70.7%). Fewer physicians were aware of GINA's limitations regarding life insurance (53.7%) and long-term care insurance (58.8%). Physicians demonstrated highest levels of concern for health insurance, life insurance, and long-term care insurance discrimination, with less concern for employer and family/social discrimination. Level of concern for the risk of genetic discrimination did not correlate significantly with awareness of GINA. Approximately 17months after GINA was signed into federal law, physicians' knowledge remained limited regarding the existence of this legislation and relevant details. Physicians who are aware of GINA continue to have significant concerns regarding the risk of genetic discrimination. This study reveals the need to further educate physicians about the existence of GINA and the protections offered.

Genetic Testing, Conscientious Refusal of Medical Treatment to Children, and Organ Donation: An Introduction

This second issue of the 35th volume of The Journal of Medicine and Philosophy (JMP) is a collection of articles on a variety of bioethical topics. Though not connected thematically, these papers share the high quality this journal strives to present in every issue, whether it is a thematic issue or a nonthematic, year after year. The first article in this issue of JMP is “Genetic nondiscrimination and healthcare as an entitlement” by Kious (2010). The author begins by noting that the US government outlawed most forms of genetic discrimination in health insurance in June, 2008, when then-President George W. Bush signed the Genetic Information Nondiscrimination Act of 2008 into law. This law prohibits insurers from requesting genetic tests from prospective costumers or using the results of previous genetic tests to determine customers’ eligibility for coverage or to determine their premiums. It, also, prohibits insurers from adjusting the premiums or policies or denying the claims of currently policyholders based on any genetic information obtained from any of a variety of these tests. According to Kious, most of the justifications for this law, and genetic nondiscrimination in general, “assume some form of genetic exceptionalism: they claim, or at least seem to claim, that there is something special about genetic information, or discrimination on the basis thereof, that makes such discrimination specially wrong, in contrast with discrimination on the basis of other sorts of information” (p. 87). Kious argues, however, that such reasoning is often mistaken, confused, and misleading. He argues further that the only plausible arguments against genetic discrimination, which ought to be accepted, are those which depend on the view that health care is an entitlement because it is this view that lays at the foundation, or at the very least as an unargued for presupposition, by all arguments against genetic discrimination in health care.

Biomarkers in psychiatry: drawbacks and potential for misuse.

For more than 20 years, researchers have attempted to identify diagnostic and prognostic biomarkers for psychiatric disorders including schizophrenia, major (unipolar) depression, and bipolar disorder. Advocates of this research contend that identifying such biomarkers will aid in the diagnosis of these disorders, as well as the possible development of effective psychiatric medications to treat them. Currently, there are no diagnostic tests available. This is largely due to the multi-factorial nature of psychiatric disorders. Biomarker testing of individuals is also prohibitively expensive because significant expertise is required to conduct tests and follow-up counseling for the patient is often necessary. It is cautioned that widespread biomarker testing could lead to negative consequences such as discrimination in health insurance and employment, as well as selective abortion.

Evolving perspectives on genetic discrimination in health insurance among health care providers

Previous studies have documented that concerns about genetic discrimination (GD) may influence access to and participation in medically necessary care. We sought to characterize how GD issues influence current cancer genetics professional (CGP) practice, determine if their attitudes regarding GD have changed over time, and compare their knowledge and attitudes regarding laws prohibiting GD to a contemporary cohort of non-genetics clinicians. Members of the National Society of Genetic Counselors Familial Cancer Special Interest Group were invited to complete a 39 item online survey, adapted from previously published instruments. The resulting data were compared to a survey of CGPs published in 2000 and to a contemporary cohort of non-genetics clinicians (n = 1,181). There were 153 qualified respondents. Compared to the historical CGP cohort (n = 163), a significantly greater proportion said they would bill insurance for the cost of genetic testing for themselves (P < 0.0001). Most CGPs (94%) considered the risk of GD to be low to theoretical, concordant with 64% who expressed confidence in existing federal laws prohibiting GD. The mean knowledge score of CGPs regarding GD protective laws was significantly greater than that of non-genetics clinicians (P < 0.001). As barometers of change, CGPs show a migration in opinion over the past 8 years, with decreased fear of GD and greater knowledge of laws prohibiting GD compared to non-genetics clinicians. Better knowledge of GD and protective legislation, may facilitate non-genetics clinician utilization of genetics and personalized medicine.

Attitudes and Practice of Genetic Counselors Regarding Anonymous Testing for BRCA1/2

Patients and clinicians alike view anonymous testing as a potential way to avoid perceived risks of genetic testing such as insurance and employment discrimination and the potential loss of privacy. To assess their experience with and attitudes towards anonymous testing for BRCA1/2, genetic counselors were invited to complete an internet-based survey via the NSGC Familial Cancer Risk Counseling Special Interest Group (FCRC-SIG) listerv. A majority of the 115 respondents (70%) had received requests from patients for anonymous BRCA1/2 testing at some point in their careers and 43% complied with this request. Most counselors, however, encountered such requests infrequently, 1-5 times per year. Although genetic counselors do not generally encourage anonymous testing and over a third of respondents feel it should never be offered, a substantial subset support its use under specific circumstances. In general, a strong consensus exists among counselors that anonymous testing should not be offered routinely. In light of the current legislative landscape, it is of note that a substantial proportion of respondents (42.7%) cited the threat of life insurance discrimination as a reason for pursuing AT, and fewer cited health insurance (30.0%) or employment discrimination (29.1%) as justifications. Since there exists no federal legislative protections against discrimination by life insurance companies, it makes sense that genetic counselors were more responsive to this issue as opposed to the threat of discrimination in health insurance and employment.

Mental health parity.

Probably the most far-reaching legislation that affects nurse therapists today is that of mental health parity. Officially designated Decade of the Brain, the 1990s brought unprecedented federal and state legislation to end health insurance discrimination against individuals with mental illnesses. Federal Parity Mental Health Parity Act of 1996. The Mental Health Parity Act of 1996 became effective January 1, 1997, and will sunset on September 30, 2001. It requires employers that offer mental health benefits to set annual and lifetime caps equal to those for medical and surgical benefits. The measure excludes businesses with 50 or fewer employees, and allows all employers to be exempted from the law if their costs rise more than 1% as a result of complying with the requirements. The law allows health insurance plans to set different benefit levels for copayments, deductibles, out-of-pocket payments, inpatient hospital days, and outpatient visits. Relationship to state law. A state law requiring more comprehensive coverage is not weakened by the federal parity law, nor does the federal law preclude a state from enacting stronger parity legislation. On April 14, 1999, U.S. Senators Pete Domenici (R-NM) and Paul Wellstone (D-MN) introduced the Mental Health Equitable Treatment Act of 1999, which would require full health insurance parity for the most severe, biologically based mental illnesses. This legislation would prohibit unequal restrictions on annual and lifetime mental health benefits, inpatient hospital days, outpatient visits, and out-of-pocket expenses. Variations and amendments to this federal bill are being considered. Overview of State Parity Laws After the Mental Health Parity Act of 1996 was signed into law, the momentum shifted to the states. A firestorm of legislative activity created a patchwork quilt of various parity laws around the country. A total of 28 states now have some degree of mental health parity, with fairness bills pending in many other state legislatures. Depending on the state, mental health parity may include any combination of the following two items: 1. Equalization of insurance benefits in relation to annual and lifetime caps 2. Equalization of benefit levels for copayments, deductibles, out-of-pocket payments, inpatient hospital days, and outpatient visits. In 1999, 11 states (California, Hawaii, Indiana [expansion of '97 law], Louisiana, Missouri [expansion of '97 law], Montana, Nebraska, Nevada, New Jersey, Oklahoma, Virginia) and two territories (Guam, Puerto Rico) passed parity legislation. In 1998, four states (Delaware, Georgia, South Dakota, Tennessee) passed parity legislation. In 1997, nine states (Arizona, Arkansas, Colorado, Connecticut, Indiana, Missouri [managed care only], South Carolina, Texas [expansion of earlier requirement], Vermont) passed mental illness parity legislation. Between 1991 and 1996, seven states (Maine, Maryland, Minnesota, New Hampshire, North Carolina [state employees only by administrative order], Rhode Island, Texas [state employees only]) effected mental illness parity measures. As each state passes some form of parity legislation or expands existing law, managed care networks are opening up to accept additional therapists to handle the increased workload. The NAMI website gives a state-by-state breakdown of mental illness parity laws. At this site it is possible to find out the specific provisions each state has passed, if any, and when the law has or will become effective. If you reside in a state that has recently passed or amended parity legislation, you are in a window of opportunity that will not last long. Once networks reach their provider quotas, it will be very difficult to gain entry. To take advantage of this window of opportunity, here are several steps you can take: 1. …

Influence of genetic discrimination perceptions and knowledge on cancer genetics referral practice among clinicians

PurposeTo describe nongenetics clinicians' perceptions and knowledge of cancer genetics and laws prohibiting genetic discrimination, attitudes toward the use of cancer genetic testing, and referral practices. MethodsInvitations to participate were sent to a random stratified sample of California Medical Association members and to all members of California Association of Nurse Practitioners and California Latino Medical Association. Responders in active practice were eligible and completed a 47-item survey. ResultsThere were 1181 qualified participants (62% physicians). Although 96% viewed genetic testing as beneficial for their patients, 75% believed fear of genetic discrimination would cause patients to decline testing. More than 60% were not aware of federal or California laws prohibiting health insurance discrimination—concern about genetic discrimination was selected as a reason for nonreferral by 11%. A positive attitude toward genetic testing was the strongest predictor of referral (odds ratio: 3.55 [95% confidence interval: 2.24-5.63], P < 0.001) in stepwise logistic regression analyses. The higher the belief in genetic discrimination, the less likely a participant was to refer (odds ratio: 0.72 [95% confidence interval: 0.518-0.991], P < 0.05), whereas more knowledge of genetic discrimination law was associated with comfort recommending (odds ratio: 1.18 [95% confidence interval: 1.11-1.25], P < 0.001) and actual referral (odds ratio: 3.55 [95% confidence interval: 2.24-5.63], P < 0.001). ConclusionConcerns about genetic discrimination and knowledge deficits may be barriers to cancer genetics referrals. Clinician education may help promote access to cancer screening and prevention.

Currents in Contemporary Ethics

The Genetic Information Nondiscrimination Act of 2008 (GINA)1 was signed into law on May 21, 2008, after a 13-year struggle in Congress. GINA prohibits genetic discrimination in employment and health insurance, thereby supplementing existing federal protections against genetic discrimination in employer-sponsored group health plans contained in the federal Health Insurance Portability and Accountability Act of 1996 (HIPAA)2 and state laws prohibiting genetic discrimination in employment and individual health insurance.3 Although there have been very few documented instances of genetic discrimination in health insurance and employment, the fear of such discrimination has led many at-risk individuals to decline genetic testing in both the clinical and research settings. The findings section of GINA specifically states that federal legislation “is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.”4 The approach and relative merits of GINA are subject to debate, but even its supporters recognize that GINA has major shortcomings.5 Three of the most commonly noted deficiencies are the following.6 First, GINA’s ban on genetic discrimination is not comprehensive. GINA does not apply to life insurance, disability insurance, long-term care insurance, or other potential uses of genetic information. Consequently, it is not clear that its limited protections will be sufficient to allay the fears of individuals currently dissuaded from undergoing genetic testing. Second, GINA prohibits discrimination based on genotype, but not phenotype. Thus, GINA only applies to individuals who are asymptomatic. In the health insurance context, individuals are protected from discrimination based on their genetic risk of disease, but they are not protected if they develop the disease.7 In the overwhelming number of states, health insurance companies may lawfully raise the rates or refuse to renew the policies of individuals based on a change in their health condition. Third, the employment provisions of GINA prohibit employers from requiring or requesting an individual to undergo genetic testing or disclosing the results of a genetic test as a condition of employment.8 Nevertheless, GINA does not affect a key provision of the Americans with Disabilities Act (ADA),9 under which an employer may, after a conditional offer of employment, lawfully require an individual to sign an authorization to disclose all of his or her health records to the employer.10 Because there is currently no feasible way to segregate genetic from non-genetic information in either paper or electronic health records, it must be anticipated that, notwithstanding GINA, many – if not most – custodians of health records will continue the practice of sending requesting employers all of an individual’s health records upon receipt of an authorization.11 A previously unexplored but critical issue is how GINA’s limited coverage and the ADA’s limited coverage apply along the continuum from genotype to expressed disease. Although the same problem of determining when a condition is “manifested” exists under the health insurance provisions of GINA, this commentary is limited to genetic discrimination in employment.

Is GINA worth the wait?

It has been pending in Congress for twelve years, despite the support of the last two presidential Administrations and the National Institutes of Health. It has been the subject of extensive affirmative lobbying by academic medical centers, pharmaceutical and biotech companies, genetic disease advocacy groups, and civil rights organizations. It has overcome vehement objections by employers and insurers. Its final passage, however, has been thwarted by a few Congressional leaders, who have prevented enactment despite overwhelming bipartisan support in both houses of Congress.Based on this legislative history, one could not help but assume that the Genetic Information Nondiscrimination Act (GINA) is a revolutionary piece of legislation that, if finally enacted, would provide extensive, effective, and comprehensive protection against genetic discrimination in health insurance and employment Unfortunately, such an assessment would be incorrect. Indeed, GINA may be a case of too much ado about too little.

Genetic Discrimination in Health Insurance: Current Legal Protections and Industry Practices

Most states have enacted genetic nondiscrimination laws in health insurance, and federal legislation is pending in Congress. Scientists worry fear of discrimination discourages some patients from participating in clinical trials and hampers important medical research. This paper describes a study of medical underwriting practices in the individual health insurance market related to genetic information. Underwriters from 23 companies participated in a survey that asked them to underwrite four pairs of hypothetical applicants for health insurance. One person in each pair had received a positive genetic test result indicating increased risk of a future health condition--breast cancer, hemochromatosis, or heart disease--for a total of 92 underwriting decisions on applications involving genetic information. In seven of these 92 applications, underwriters said they would deny coverage, place a surcharge on premiums,or limit covered benefits based on an applicant's genetic information.