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The power of data, the price of exclusion.

LAST JUNE, a special issue of Morbidity and Mortality Weekly Report (MMWR) focused on suicide with the stated goal "to provide insights that might lead to successful prevention programs." The issue included articles on trends in suicide by young people, suicide attempts and physical fighting among high school students, school-associated suicides, suicide among Hispanics, and suicidal behavior in China. MMWR is a publication of the Centers for Disease Control and Prevention, and its purpose is to alert public health officials about emerging trends, issues, and outbreaks of disease. On occasion it dedicates an issue to a single theme in order to draw attention to important topics.

Suicide is the eleventh highest cause of death in the United States, third among ten-to-24-year olds, and in 2002 was the cause of over 124,000 visits to emergency rooms in the U.S. The prevention of suicide is a national priority, and objectives to track and ultimately reduce suicide are included in Healthy People 2010, the nation's health promotion plan. Countless studies over the past ten years document the fact that gay youth are at increased risk for attempting suicide. Studies have appeared in publications such as the Archives of General Psychiatry, International Journal of Eating Disorders, Pediatrics, Archives of Pediatrics and Adolescent Medicine, Journal of Gay and Lesbian Social Services, Journal of Pediatrics, Social Work, American Journal of Public Health, and Journal of Adolescent Research, and in reports published by the states of Massachusetts, Oregon, Vermont, and Washington. Of all the issues that affect gay youth, there is no other issue on which there's so much consensus as on gay youths' risk of suicide.

And yet, despite this robust finding, no mention of sexuality appears in the 28-page Morbidity and Mortality Weekly Report for June 2004. In July 2004, a similarly glaring omission appeared in an MMWR report on violence among high school students. A product of the federal government, the MMWR is subject to the same political pressures as other parts of the Department of Health and Human Services. So it should come as no surprise that the editors of the MMWR would shy away from open communication about sexuality. The omissions, however, raise questions about the ability of the federal government to succeed in securing the health and well-being of its citizens.

Unlike most other countries, the United States takes a disease-specific rather than a population-specific approach to health. That means that rather than examine a group of people to determine what health issues affect them, public health officials in the U.S. examine a disease and ask which groups are affected by it. Instead of a department of sexual minority health, there is an AIDS program, a division of tobacco control, and so on. The resulting system is one in which the needs of minorities are hidden in half a dozen programs scattered across an ocean of public health bureaucracy.

Imagine for a moment living in an America without a public health infrastructure. No one tracks disease or monitors the safety of food and drinking water. Emerging epidemics fester unnoticed until they ultimately cycle out of the surviving population, faded into memory and legend. Habits may die hard, but without health promotion they don't die at all. People continue to smoke, eat poorly, not exercise, and have sex without understanding the risks to their well-being and how to minimize those risks. Life expectancy would be lower than it currently is; infant mortality would be higher; and the overall quality of life would be lower than what Americans now enjoy.

At a time when government is being strangled and bled, it's important to remind ourselves that government plays a vital role in maintaining our ability to thrive: to move around, to stay healthy, to be safe. When sexual minorities are not included in government definitions, they inevitably miss out on some of the benefits of public health. As a result, health indicators (such as smoking rates) are often much worse for sexual minorities than for the general population.

Data are a cornerstone of any public health system, and the lack of data on sexual minorities correlates with the failure of public health to address this group's needs. Information generated by the scientific community informs policy set by legislators and regulatory agencies. Citizens groups also play a critical role: be it a working committee at the National Institutes of Health or an advisory body of a local health department, citizens across America create policy every day. Most of the time, that policy is rooted in science: peer-reviewed, published research that's used to determine which problems need to be addressed and how; and more importantly, how money is to be spent. High-quality scientific research is vital to our ability to address problems.

"One of the greatest threats to the health of lesbian, gay, and bisexual (LGB) Americans is the lack of scientific information about their health," asserted Randall Sell in the June 2001 issue of the American Journal of Public Health. Sell is a Columbia University professor who was contracted by the U.S. Department of Health and Human Services to review sexual orientation data collection practices at the department. "Without adequate information on the health of LGB Americans, measurable advances in civil rights and basic health will be difficult to achieve."

Without data, it's difficult to establish meaningful policy. For example, if you want to reduce the rate of tobacco use in the gay population, you first have to know what proportion uses tobacco, and also why they do so. And after you've launched an effort to tackle this problem, you'll need to find out whether or not the policy or program is working, and you'll need to look at the data over a period of time to determine its impact.

Researchers already gather this sort of information for the general population and for racial and ethnic minorities. What they don't do is ask questions that allow the data to be analyzed specifically for sexual minorities. And why not? Researchers often make the claim that it's especially difficult to gather information on sexual minorities. First, there is the conundrum of whether to ask about identity ("Are you gay?") or behavior ("Who do you have sex with?"). Then there's the issue of honesty: since information is gathered over the telephone or in person, members of sexual minorities may be reluctant to reveal themselves when asked.

A methodology for collecting data on sexual minorities has been around since the early 1990's. Various surveys approach the question from diverse angles to ascertain the attraction, behavior, and/or identity of the respondents. Data collection systems such as the U.S. Census, the HIV/AIDS Surveillance System, and the Youth Risk Behavior Surveillance System have incorporated some aspects of data-gathering on sexual orientation, identity, and attraction. Having said that, there is as much consensus on how to collect data on sexual orientation as there is on collecting data on racial and ethnic status, which isn't much. This is where homophobia is different from racism. The prospect of asking subjects whether or not they are gay disturbs many public health officials and researchers. Heterosexuals may be offended by the question. Sexual minorities often distrust how the information will be used. The problem of how to collect data is often used as an excuse for not collecting data at all.

Still, researchers routinely ask subjects about matters that would otherwise be considered private. Take, for example, a study from the Journal of Interpersonal Violence (January 2004) entitled "Sexual Deviance Among Male College Students." Researchers at Southeast Missouri State University wanted to determine whether group affiliation or prior deviant acts was a better indicator of sexual deviance among male college students. They surveyed male athletes and fraternity members about whether or not they had, in the past, engaged in generic deviance (driving recklessly, stealing, drug use, etc.) and coercive sexual behavior (a range of non-consensual contact such as kissing, hand-holding, sexual touching, intercourse). The use of gender neutral language in the article's conclusion is curious given that the subjects of the study are male and the questions that made up the coercive sexuality scale were entirely heterosexual: "Kissed a female against her will?" or "Ignored a female's protests before or during sex?" We know from other research that men who rape other men tend to be heterosexual. So why these researchers couldn't find a gender-neutral way to ask this question is not at all clear.

When left out of research such as this, sexual minorities become invisible, not just in the annals of science, but at the policy table as well. While heterosexual sexual assault prevention programs can use this study to inform funding applications, establish policy, and justify programs, those wanting to prevent same-sex sexual assault cannot. Prior deviance may predict same-sex sexual deviance, as this study suggests it predicts heterosexual sexual deviance, but in the end we just don't know.

HOW RESEARCH is published is often a complicated process. In theory, disciplines establish standards while editorial boards and peer-reviewers maintain those standards through rigorous examination of research before it is published. Few journals publish standards, but professional associations who are often also publishers of research do have codes of ethics.

The American Psychological Association's (APA) code of ethics states "scientific or professional knowledge in the discipline of psychology establishes that an understanding of factors associated with age, gender, gender identity, race, ethnicity, culture, national origin, religion, sexual orientation, disability, language, or socioeconomic status is essential for effective implementation of their services or research." But the APA's own body of research reveals a pattern in which demographic factors are either the subject of study (i.e., how racial and sexual minorities think and act) or wholly absent (i.e., how generic people in general think).

An article published in January 2004 examined the relationship between memory and stigma in older adults. "Explicit and Implicit Stereotype Activation Effects of Memory," published in Psychology and Aging, one of the APA's many journals, compared responses to standardized memory tests to determine whether or not positive and negative aging stereotypes had an effect on memory in older adults. The study, which comes out of a wealth of research on the effects of social context on aging, fails to take minority status into account, instead making the assumption that older adults don't differ in important ways because of their demographic profile. And yet, racial and sexual minorities have a very different relationship to social context than do their straight white peers. The lack of differentiation is a glaring flaw of the study, and the reductionism employed by the researchers invalidates racial and sexual minorities and seems to violate, if not the letter, then at least the spirit of the APA's code of ethics.

The pervasiveness of racism and heterosexism should not come as a surprise. The sad truth is that the articles mentioned here are representative of most research produced by the scientific community. Whether researchers are motivated by ignorance, indifference, or purposeful exclusion is not clear; one suspects a combination of all three. Change will only come when the editorial boards of those journals that publish such research require scholarship to include accurate demographic data pertinent to sexual minorities. What is needed are more sexual minorities serving as peer-reviewers and working within organizations to implement standards that address these issues.

Beyond these specific actions, sexual minorities need to demand greater inclusion in scientific research and data gathering. Research isn't only published in peer-reviewed journals. Newspapers and television news programs often report on research findings. The more people ask why sexual minorities are not being included, the more likely it is that they'll be included in future research.


Centers for Disease Control and Prevention. "Violence-related behaviors among high school students--United States, 1991-2003." Mortality and Morbidity Weekly Report, 53 (2004).

Centers for Disease Control and Prevention. "Suicide and attempted suicide." Mortality and Morbidity Weekly Report, 53 (2004).

American Psychological Association. Ethical Principles of Psychologists and Code Of Conduct, 2004.

Healthy People 2010. Conference edition. U.S. Department of Health and Human Services, 2000.

Hess, T., Hinson, J., & Statham, J. "Explicit and implicit stereotype activation effects on memory: Do age and awareness moderate the impact of priming?" Psychology and Aging, 19(3) (2004).

Jackson, A., Veneziano, L., & Riggen, K. "Sexual deviance among male college students." Journal of Interpersonal Violence, 19(1) (2004).

Scarce, M. Male on Male Rape: The Hidden Toll of Stigma and Shame. Plenum Press, 1997.

Sell, R., & Becker, J. (2001). "Sexual orientation data collection and progress toward Healthy People 2010." American Journal of Public Health, 91 (2001).

Ric Kasini Kadour is a freelance writer and gay men's health advocate living in Montreal. He currently moderates the Gay Men's Health Summit eList.
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Title Annotation:ESSAY
Author:Kadour, Ric Kasini
Publication:The Gay & Lesbian Review Worldwide
Geographic Code:1USA
Date:Jan 1, 2005
Previous Article:Found: 85,000 black gay households.
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